Selective Justice, Genetic Discrimination,
and Insurance: Should We Single Out
Genes in Our Laws?
Trudo Lemmens”
This article discusses the desirability of legislation fo-
cusing on genetic discrimination, in particular in the context of
instance. Many American states and some European countries
as well as the Council of Europe have introduced protective
measures against discrimination on the basis of genetic suscep-
tibility. The author questions their effectiveness and queries
whether they may be inequitable, because they fail to address
more fundamental underlying issues related to the nature of in-
surance, access to health care and unequal distribution of
wealth. There is also a problem of definition in these statutes.
They fail to capture what constitutes genetic information.
Nonetheless, the author argues it is important to consider the
social consequences of genetic testing.
Michael Walzer’s theory of justice is used to examine the
role of insurance and health care. Using this approach, the author
finds the American system of distribution for health care to be
problematic. This is then used to inform the author ‘s discussion
of the future of health care in Canada.
Anti-discrimination provisions could be used in a way that
is consistent with Walzer’s theory of justice. They would en-
comtxass bath genetic and non-genetic health factors. These can
be modelled on current anti-discrimination statutes in Canada.
The author then proposes administrative committee structures to
regulate the use of genetic data in Canada.
Cot article met en cause I bien-fond6 de l’adoption de
lois portant str la discrimination gdndtique, en particulier dans
le domaine do l’assurance. Plusiess dtats am&icains, ainsi que
certains pays europdens et le Conseil de i’Europr, ont adopt6
des mesures visant A protdger les individus contre la discrimi-
nation baste sur la susceptibilit6 gdndtique. L’auter remet en
question l’eflicacit6 de ce mesures et leer 6quit6j dtant donn6
qu’eles ne s’attaquent pas A nomres de problhmes plus fonda-
mentaux reridA la nature maine de l’assurance, A l’accessibiilt6
asx soins de sant6 et 2L l’intgalit6 dan la distribution des riches-
ses. Leur peu do rdussite bt identifier correctement, dans leurs
ddfinitions, ce qui constitue de l’information gndtique leas af-
faiblit davantage.
Ndanmoins, l’auteur soutient qu’il est important do tesir
compte des consiquences sociales des tests gdnttiques. La
thtorie de la justice avancte par Michael Walzer, lorsque utill-
ste afin d’6tudler l rdlo de l’assurance et des soins de sant,
rdvhlc quo l systbne amtricain de distribution des soini do
sant6 southve plusieurs probibmes. Ces constatations servent
alors de guide
la discussion de l’auteur sur l’avenir du rdgime
de soins de santd au Canada.
Les dispositions anti-discrimination pouraient etre utili-
sdes de manibre compatible avec la thorie de lajustice do Wal-
zer. Eles incluraient alors des facteum de rant6 autant g6n6-
ques quo non-g6ntiques, et suivraient l modhle fourni par les
lois anti-discrimination existantes au Canada. L’auteur propose
finalement l’institution de comitts administratifs pour rtgle-
menter l’utilisation de donn~es gdndtques au Canada.
. Assistant Professor, Faculty of Law and Department of Medical Genetics and Microbiology, Uni-
versity of Toronto. Earlier and reduced versions of this paper were presented at “Human Rights into
the Twenty-first Century: A Conference in Celebration of the 10th Anniversary of the International
Human Rights Programme”, Faculty of Law, University of Toronto, 3 October 1998; at the annual
Atlantic Research Centre Symposium, Dalhousie University; and at the University of Toronto Joint
Centre for Bioethics Seminar Series. I want to thank Laura Purdy and Leigh Turner for helpful com-
ments on this earlier version. I am very much indebted to Laura Wiebe for research assistance and to
Paul Miller for editorial comments. Research for this paper was supported by a Research Grant of the
Canadian Breast Cancer Research Initiative (National Cancer Institute). Parts of this article are further
developments of earlier work. See T. Lernmens, infra note 4; T. Lemmens & P. Bahamin, infra note
18.
McGill Law Journal 2000
Revue de droit de McGill 2000
To be cited as: (2000) 45 McGill LJ. 347
Mode de rdfdrence : (2000) 45 R.D. McGill 347
MCGILL LAW JOURNAL / REVUE DE DROIT DE MCGLL
[Vol. 45
Introduction
I.
II.
II1.
IV.
Gene Fright
Is There Genetic Discrimination in Canada?
Regulatory Responses to Genetic Discrimination
Prohibitory Approaches in Reaction to the Threat of Genetic
Discrimination
International Reactions
Genetic Discrimination Legislation in the United States
Genetic Privacy Acts
V.
VI.
VII.
VIII. Why Legislative Initiatives Focusing on Genetics?
IX.
X. What is “Genetic Data”?
XI.
XII.
XIII.
XIV.
The Claim of Genetic Exceptionalism
How Genetics Highlights Existing Problems
Degrees of Unfairness
Insurance Underwriting, Adverse Selection, and Fairness
Health Care and Insurance in a Just Society
Fairness in Access to Health Care in the United States
Fairness and Genetic Discrimination Statutes in Europe
The Efficacy of Statutes Focusing on Genetics
XV.
XVI.
XVII.
XVIII. Lessons for the Canadian Health Care and Insurance Systems
XIX.
XX.
XXI.
Regulatory Framework in Canada
Human Rights Exceptions for Insurance Discrimination
Curbing Potential Negative Consequences of Genetics
Canadian Health Care and Insurance
Proposals for Specialized Commissions Responsive to Societal
Concerns
XXII.
in
Conclusion
20o0
T LEMMENS – GENETIC DISCRIMINATION AND INSURANCE
Introduction
When the Belgian Parliament discussed what was to become the world’s first in-
surance law to have a sweeping prohibition on the use of genetic data for underwrit-
ing purposes,’ a senator argued that the provisions focusing on genetic information
were unfair, insofar as they discriminated against people affected by other health con-
ditions.’ He pointed out, as an example, that high cholesterol levels are already used to
determine one’s risk in insurance terms and that there is no reason to protect carriers
of a genetic susceptibility more than those having high cholesterol levels. Both are
statistically predicative of increased risk to health but do not offer certainty on an in-
dividual level. His example is perhaps not the most appropriate one-research indi-
cates that high cholesterol levels may very well be associated with specific genetic
mutations’-but it touches upon one of the most fundamental problems of the current
wave of genetic anti-discrimination provisions.
In this paper, I will argue that statutes singling out genetic susceptibility as a cate-
gory, and offering it much wider protection than other similar health conditions, al-
though intended to promote equity in access to social goods, may themselves be inef-
fective and to some extent even inequitable. I will discuss the way in which many
policy analysts in the United States have embraced anti-discrimination and privacy
legislation focusing on genetics as an imperfect way of protecting an already insuffi-
cient degree of access to health care. I will suggest that this may lead to the ignoring
of more fundamental issues related to the nature of insurance, access to health care
and unequal distribution of wealth. Moreover, I will argue that many of the genetic
anti-discrimination and genetic privacy statutes are flawed, because they fail to cap-
ture what constitutes genetic information.
However, I will not argue that it is unreasonable to pay particular attention to the
social consequences of genetic testing. While genetic testing does not necessarily
raise entirely new issues, it does highlight existing problems in, for example, access to
health care and financial security. Referring to Michael Walzer’s theory of justice, I
will analyse the role of insurance and suggest that such analysis reminds us that health
care ought to be offered on the basis of need.’ Walzer’s theory is useful when thinking
‘Wet 25 juni 1992 op de landsverzekeringsovereenkomst, B.S. 20 August 1992.
2 H. Cousy & G. Schoorens, De nieuwe wet op de landverzekeringsovereenkomst. Parlementaire
voorbereiding van de Wet van 25 juni 1992 en van de wjzigende Wet van 16 maart 1994 (Antwerp:
Kluwer, 1994) at 306.
See ag. I. Oren et al., ‘The D Allele of the Angiotensin-converting Enzyme Gene Contributes
Towards Blood LDL-cholesterol Levels and the Presence of Hypertension” (1999) 145 Atheroscler.
267 and D.J. Waxman, “P450 Gene Induction by Structurally Diverse Xenochemicals: Central Role
of Nuclear Receptors CAR, PXR, and PPAR” (1999) 369 Arch. Biochem. Biophys. 11.
4I presented a first analysis of the relevance of Walzer’s theory at the International Conference on
Genetic Information: Acquisition, Access and Control, Preston (U.K.), 5-6 December 1997. See T.
Lemmens, “Private Parties, Public Duties? The Shifting Role of Insurance in the Genetics Era” in A.
Thompson & R. Chadwick, eds., Genetic Infonnation: Acquisition, Access, and Control (New York-
MCGILL LAW JOURNAL/REVUE DE DROIT DE MCGILL
[Vol. 45
about the lessons we can learn from the U.S. debate on genetic discrimination and
from the European initiatives in this area. I will argue that genetic anti-discrimination
statutes, and the justification given for their introduction, highlight fundamental
problems in the U.S. with respect to fair distribution of health care as a social good.
The saga of these statutes, and the patchwork approach they represent, has to be re-
vealed when discussing the future of the health care system in Canada and the need
for specific anti-discrimination statutes. The European initiatives in the context of ge-
netic discrimination are of particular interest to us, because they have arisen in coun-
tries with some form of universal access to health care.
Finally, I will suggest how we can use anti-discrimination provisions in the con-
text of insurance in a way that would be congruent with Walzer’s theory of justice,
based on a fair distribution of goods. This solution should encompass both genetic
and non-genetic health factors and should respect our communal understanding of
what constitutes a fair distribution of or fair access to goods, taking into consideration
the meaning of these goods in our society. Some current anti-discrimination statutes in
Canada and the regulatory framework developed by these statutes could be used as
models for a flexible system to address the potential negative consequences of dis-
crimination resulting from indicators of future health, including genetic testing. This
model will be helpful not only to address questions with respect to the reasonableness
of insurance discrimination, but also to analyze discrimination in the context of, for
example, employment. Considering the pace of development of genetic technologies,
it is crucial to think of an administrative structure which can respond adequately and
swiftly when protection of human rights is needed, without falling back on patchwork
regulations that are inconsistent with global social policies. A committee structure
could be developed, in which the necessary expertise, representation and scientific
support is ensured to enable committee members to engage in socially responsible de-
bate over the appropriate use of this technology and, if necessary, in regulatory action.
I. Gene Fright
Although genetics has become medicine’s most powerful modem tool to under-
stand and control health and disease, many observers have raised concerns about the
dangers of discriminatory practices resulting from genetic testing. Alarmist predic-
tions of the early 1990s, suggesting that we are on the verge of the creation of a new
social class, a genetic proletariat, a class of people who are excluded from many as-
pects of ordinary social life solely because of their genetic make-up’ have not yet
come true. Early reports indicate that insurers have an interest in using genetic infor-
Plenum Press, 1999) 31. 1 am indebted to Benjamin Freedman and Charles Weijer for discovering the
importance of Michael Walzer for analyzing issues of justice in health care. See Walzer, infra note
152.
– R.C. Dreyfuss & D. Nelkin, “The Jurisprudence of Genetics” (1992) 45 Vand. L. Rev. 313; P.R.
Billings et al., “Discrimination as a Consequence of Genetic Testing” (1992) 50 Am. J. Hum. Genet.
476.
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T LEMMENS – GENETIC DISCRIMINATION AND INSURANCE
mation and that they often are ill informed about the significance of genetic data.’
However, systematic testing does not seem to take place at this time. Some of the
authors who first drew attention to cases of discrimination based on genetic suscepti-
bility are now also suggesting that “the use of genetic information by insurance com-
panies and other institutions is quite limited’ 7 So far, insurers have not been particu-
larly interested in using genetic testing as an underwriting tool for several reasons.
Fear of negative public reactions is certainly among them. Other reasons include the
prohibitive cost of genetic testing’ and the complexity of the information gained from
genetic testing.
The fear of genetic discrimination continues, however, to be exacerbated by de-
velopments in genetic research. Research into the development of DNA chip and mi-
croarray technology, which makes it possible to “scan” entire genes for the detection
of different mutations, will bring to the market diagnostic tools that are faster, more
efficient, and cheaper Prominent genetic researchers such as Francis Collins predict
that it will be possible in the future to undergo a battery of genetic tests and to have
information about a variety of susceptibility genes and potential prevention strate-
gies.’ The interest in conducting and undergoing such tests as part of medical re-
search and treatment will also increase with the development of pharmacogenomics.”
Pharmacogenomics is the area of genetic research that analyses how drug therapies
may impact differently depending on individual people’s specific genetic code. It is
expected that the identification of genetic variations will make it possible to provide
treatment that is tailored to an individual person’s genetic structure. This may create a
situation in which predictions can be made about an individual’s expected health care
expenditures.
The capacity to conduct such tests quickly and, more importantly, cheaply will
boost demand, commercial production and distribution of the tests, making it poten-
tially cost-effective to introduce genetic screening in a variety of non medical settings,
6 See ibid.; M.R. Natowicz, J.K. Alper & J.S. Alper, “Genetic Discrimination and the Law” (1992)
50 Am. J. Hum. Genet. 465; and L.N. Geller et aL, “Individual, Family and Societal Dimensions of
Genetic Discrimination: A Case Study Analysis” (1996) 2 Sci. Eng. Ethics 71.
” J. Beckwith & J.S. Alper, “Reconsidering Genetic Antidiscrimination Legislation” (1998) 26 J. L.,
Med. & Ethics 205 at 206 [hereinafter “Genetic Antidiscrimination”].
‘ R.E. Braun, “Keeping Life Insurance Affordable in the Era of Genetic Medicine” (September
1999) J. Finan. Serv. Prof. 46 at 47.
‘ For a recent overview of new genetic technology and its impact on medicine, see K.M. Kurian,
CJ. Watson & A.H. Wylie, “DNA Chip Technology” Editorial Comment (1999) 187 J. Pathol. 267;
see also SJ. Watson & H. Akil, “Gene Chips and Arrays Revealed: A Primer on Their Power and
Their Uses” (1999) 45 Biol. Psychi. 533; for a view on the ethical implications of this technology, see
W. Henn, “Genetic Screening with the DNA Chip: A New Pandora’s Box?” (1999) 25 J. Med. Ethics
200.
“0 ES. Collins, “Shattuck Lecture–Medical and Societal Consequences of the Human Genome
Project” (1999) 341 New Engl. J. Med. 28 at 33-34.
” See R.P. Erickson, “From ‘Magic Bullet’ to ‘Specially Engineered Shotgun Loads’: The New Ge-
netics and the Need for Individualized Pharmacotherapy” (1998) 20 Bioessays 683.
MCGLL LAW JOURNAL/ REVUE DE DROITDE MCGILL
[Vol. 45
including insurance, employment, and immigration. A further hurdle to the use of ge-
netics as a testing tool in insurance, employment, and other areas is also gradually
disappearing. The “wait-and-see approach” towards genetic testing,’2 for example, is
partly due to the fact that many of the associations between genetic mutations and in-
creased risk for disease remain within the confines of research. As Lowden argues,
“Research results, on their own merit, should have little interest for insurers, employ-
ers, and others, because without associated data on the consequences of mutations in
individuals who were asymptomatic at the time of testing, the results will lack predic-
tive value:”‘
Since insurance underwriting is based on detailed actuarial predictions of risk,
most genetic findings so far have not been integrated into underwriting procedures
because of the lack of clear data. However, large population studies are underway to
establish risk predictions more precisely, for example in the context of hereditary
breast cancer.” In the future, more and more reliable risk information will become
available on a variety of diseases. Increased accuracy of genetic risk calculations
combined with cheaper and faster genetic detection of a variety of mutations will con-
stitute a significant incentive to conduct genetic testing outside the medical context.
The commercial interests in this booming technology are huge. Notwithstanding ethi-
cal concerns about the premature introduction of new tests, these interests will inevi-
tably create pressures for faster integration of genetic testing into daily clinical prac-
tice.” It can be expected that the predictive value of genetic tests will be used in the
determination of insurance premiums, and will lead to increasing individualization of
underwriting.
II. Is There Genetic Discrimination in Canada?
In Canada, there are no reports of systematic genetic testing undertaken by an in-
surance company as part of the underwriting process.” However, family traits are
taken into consideration for the determination of individual life and disability insur-
ance premiums and people may have difficulty obtaining insurance when they partici-
” J.A. Lowden, “Genetic Discrimination and Insurance Underwriting” Letter to the Editor (1992)
51 Am. J. Hum. Genet. 901-02.
” J.A. Lowden, “Certificates of Confidentiality” Letter to the Editor (1996) 58 Am. J. Hum. Genet.
436 [hereinafter “Certificates of Confidentiality”].
” D. Shattuck-Eidens et aL, “BRCA1 Sequence Analysis in Women at High Risk for Susceptibility
Mutations” (1997) 278 J. Am. Med. Assoc. 1242; B.L. Weber, “Update on Breast Cancer Suscepti-
bility Genes” (1998) 152 Recent Results Cancer Res. 49.
“T. Caulfield, “Genetic Testing in the Biotech Century: Are Physicians Ready?” (1999) 161 C.
Med. Assoc. J. 1122. For discussions of several aspects of the commercialization of genetics, see T.A.
Caulfield & B. William-Jones, eds., The Commercialization of Genetic Research: Ethical, Legal and
Policy Issues (New York. Kuwer Academic, 1999).
” Underwriting is the actuarial process by which insurance companies determine an insurance ap-
plicant’s risk status and the commensurate premium to be charged to that applicant. See below for a
more detailed discussion of the role genetics could play in this process.
2000]
T LEMMENS – GENETIC DISCRIMINATION AND INSURANCE
353
pate in research that reveals that they are carrying a specific genetic mutation. A clear
example of this would be a positive test result for Huntington’s disease, a late-onset
dominant genetic disorder. Those who carry one copy of the Huntington’s mutation
know with near certainty that they will develop the fatal condition, likely before the
age of 50.7 Testing positive almost inevitably affects insurability. People will be ex-
cluded, either from any form of coverage or from coverage for death or disability as a
result of Huntington’s. There are also reports of people with a family history of
Huntington’s disease who had not yet undergone genetic testing but were refused
coverage and told that they could undergo testing to qualify for insurance.” According
to one of these anecdotal reports, an insurer informed an applicant to reapply “should
his health improve”. The insurer thereby either tried to put pressure on the applicant
to undergo testing, or else demonstrated a clear lack of understanding of the nature of
this genetic disorder. This anecdote shows why Huntington’s is also an interesting ex-
ample of how genetic testing may improve insurability of people who have problems
obtaining insurance because of a family history. While positive test results for a ge-
netic condition may hinder someone’s insurance application, a negative test result
may often make it possible for people who were previously uninsured to obtain insur-
ance.
Huntington’s is not the only disease of which the test results may be used in the
insurance context. In interviews undertaken as part of an ongoing study on breast can-
cer and insurance, participants who tested positive for one of the breast cancer genes
expressed concerns about keeping insurance coverage and about shielding access to
that information. Two participants could not obtain insurance coverage, but not di-
rectly as a result of genetic testing. One woman was denied coverage on the basis of
family history of breast cancer, another tested positive for one of the breast cancer
genes, but had insurance problems because she was also diagnosed as having breast
cancer.”
A 1990 Quebec case involving myotonic dystrophy gives us an indication of the
type of issues that are likely to become the subject of court procedures as a result of
genetic developments. In Audet v. Industfielle-Alliance, the Superior Court annulled
17 However, recent studies raise doubt about the assessment that a positive test indicates a certainty
of developing the disease. See “Genetic Antidiscrimination”, supra note 7 at 208 and reference there.
“T. Lemmens & P. Bahamin, “Genetics in Life, Disability and Additional Health Insurance in Can-
ada: A Comparative Legal and Ethical Analysis” in B.M. Knoppers, ed., Socio-Ethical Issues in Hu-
man Genetics (Cowansville, Qc.: Yvon Blais, 1998) 107 at 122-23, nn. 10, 15.
” Information reported by Angela Shik, who is conducting interviews as part of a research project
funded by the National Cancer Institute of Canada to study the medical, ethical, and legal implica-
tions of breast cancer genetics on insurance. (Co-Principal Investigators on the grant are Dr. Donna
Stewart, Trudo Lernmens & Dr. Angela Cheung.) Interviews and surveys for this research project are
still being conducted.
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the life-insurance contract of Mr. Tremblay, a man who had died in a car-accident.O
Mr. Tremblay carried the genetic mutation for myotonic dystrophy of Steinert and had
been informed about this. He also knew that his father and brother had the disease.
Myotonic dystrophy is a degenerative disease, which can be extremely disabling in
some, while affecting others only mildly. When applying for insurance, the insurer
had asked Tremblay whether he had any physical or mental anomaly. He answered no
to that question. The court decided that this amounted to a false declaration, even if
the disease was expressed only very mildly in him and even though his widow sug-
gested he was “super normal” from any point of view.’ As a result, the court annulled
the contract ab initio.
Increasingly, the results of genetic tests will be integrated into medical files and
will become part of the array of common diagnostic tests. Insurance applicants will
have to be aware of their obligation to divulge the results of tests that indicate a higher
than average risk for disease or premature death. The Audet case highlights possible
consequences of non-disclosure, while also indicating that efforts have to be made to
help people understand the nature of the risk information.
Ill. Regulatory Responses to Genetic Discrimination
There is, in other words, reason for concerned reflection on the potential implica-
tions of genetic testing for insurance. So far, two different strategies have dominated
the debate. One approach has been to require limitations on the contractual liberty of
parties to an insurance contract. Many authors urged for such a prohibitory approach
based on either anti-discrimination law or specific prohibitions integrated within in-
surance statutes. Several countries and American states have responded to this call,
while insurance organizations in other countries replied by implementing moratoria
on the use of genetic testing. A second approach has been to urge for more sophisti-
cated privacy legislation to protect genetic data from being distributed without the
consent of those involved. This comes down to granting individuals more power over
genetic information without necessarily restricting its use. Some statutes, particularly
in the United States, combine elements of both: they provide protection against dis-
crimination and contain protection of privacy clauses.
I will first briefly describe how these two approaches have been implemented in
some European countries and in the United States. I will then discuss the rationale for
these particular initiatives, and assess whether there is reason to single out genetic in-
formation. I will then deal with the question whether these approaches are effective
and equitable.
[1990] R.RA. 500 (Sup. CL) [hereinafter Audet]. See the discussion in Lenmens & Baharnin,
supra note 18 at 139, 165-66; H. Guay, B.M. Knoppers & I. Panisset, “la g~ndtique dans les do-
maines de I’assurance et de 1’emploi” (1992) 52 R. du B. 185 at 209-10.
” Audet, ib& at 502.
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T LEMMENS – GENETIC DISCRIMINATION AND INSURANCE
IV. Prohibitory Approaches in Reaction to the Threat of Genetic
Discrimination
Among the measures to curb the negative social consequences of genetics, the cry
for a prohibitory approach has been most prominent. In particular, since the early
1990s, the fear of exclusionary practices based on genetic susceptibility has resulted
in calls for legislative intervention. With these calls, a new concept emerged: genetic
discrimination. This concept, now firmly established in the legal and bioethics litera-
ture and translated into different statutes, has been defined in various ways.’ The
varying definitions found in the literature already indicate its problematic nature.
Some describe it in general terms as any form of differentiation based on genetic in-
formation. Mark Rothstein uses the term to describe “differential treatment based on
genetic status.'” According to Larry Gostin, genetic discrimination is “the denial of
rights, privileges or opportunities on the basis of information obtained from geneti-
cally-based diagnostic and prognostic tests?”-‘ In contrast, in one of the first studies
analyzing occurrences of genetic discrimination, Paul Billings et al. define genetic
discrimination as “discrimination against an individual or against members of that in-
dividual’s family solely because of real or perceived differences from the ‘normal’ ge-
nome of that individual ” They thereby distinguish it from “discrimination based on
disabilities caused by altered genes.” In this view, the criterion for genetic discrimi-
nation is whether the disease has actually occurred or not. If the disease has not yet
occurred, the discrimination is termed genetic. If the disease is expressed, it becomes
another type of discrimination, most likely discrimination based on someone’s health
condition. Michael Yesley also mentions that “[t]he quintessential feature of genetic
discrimination is the use of genetic information about an asymptomatic person: ‘
2 See e.g. J.S. Alper et al., “Genetic Discrimination and Screening for Hemochromatosis” (1994)
15 L Pub. Health Pol’y 345; Geller et aL, supra note 6; L. Gostin, “Genetic Discrimination: The Use
of Genetically Based Diagnostic and Prognostic Tests by Employers and Insurers” (1991) 17 Am. J.
L. & Med. 109 [hereinafter “Genetic Discrimination’]; C. Lee, “Creating a Genetic Underclass: the
Potential for Genetic Discrimination by the Health Insurance Industry” (1993) 13 Pace L. Rev. 189;
and Natowicz, Alper & Alper, supra note 6.
2 M.A. Rothstein, “Genetic Discrimination in Employment: Ethics, Policy and Comparative Law”
in Swiss Institute of Comparative Law, ed., Human Genetic Analysis and the Protection of Personality
and Privacy (Zilrich: Schulthess Polygraphisher Verlag, 1994) 129 at 129.
Supra note 22 at 110.
Billings et aL, supra note 5. A similar definition is given in Natowicz, Alper & Alper, supra note
6. See also two other publications of the same research group: Alper et aL, supra note 22 at 345,
where they describe genetic discrimination as “discrimination against an asymptomatic individual
who is found to have an abnormal genotype and, as a result, considered to be affected according to the
redefinition of the disease”; and Geller et aL, supra note 6 at 72, where they define it in a more suc-
cinct way as “differential treatment of individuals or their relatives based on actual or presumed ge-
netic differences as opposed to discrimination based on phenotype:’
36 Billings et aL, ibid
7 M.S. Yesley, “Protecting Genetic Difference” (1999) 13 Berkeley Tech. LJ. 653 at 662.
MCGILL LAW JOURNAL / REVUE DE DROIT DE MCGILL
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The distinctions made by these authors may be untenable. What if a genetic con-
dition is only mildly expressed, but an individual is excluded solely on the basis of a
genetic test? For the purpose of this paper, genetic discrimination ought not to be de-
fined in such a narrow manner. It suffices to say that genetic discrimination is a term
used in a variety of settings in which people are considered to be disadvantaged or at
risk for being so, on the basis of factors related to genetics.
V. International Reactions
The authors who conducted studies on genetic discrimination are not alone in
their concerns. Reports and statements by a variety of national and international or-
ganizations express a similar desire for regulatory interventions. On an international
level, the World Medical Association issued in 1992 a Declaration on the Hwnan Ge-
nome Project, in which it suggests that “[i]t may be desirable, regarding genetic fac-
tors, to adopt the same tacit consensus which prohibits the use of race discrimination
in employment or insurance:” More recently, in November 1997, UNESCO ap-
proved a long-debated Universal Declaration on the Human Genome and Human
Rights.” The Universal Declaration provides in its section 6 that “[n]o one shall be
subjected to discrimination based on genetic characteristics that is intended to infringe
or has the effect of infringing human rights, fundamental freedoms and human dig-
nity.” The Universal Declaration further stresses the importance of confidentiality of
genetic data,”‘ the need for informed consent and the right of individuals to decide
whether they want to be informed of a genetic condition?’
The World Health Organization is in the process of adopting general bioethics
guidelines. While highlighting the incredible potential of the new genetics, the Draft
World Health Organization (WHO) Guidelines on Bioethics state that “[t]he new bio-
technology also has potential to cause major harm if misapplied or misused” and that
“[g]enetic information should not be used as the basis for refusing employment or in-
surance , ,
In many countries, national task forces were set up as early as 1987 to discuss the
social risks of the new genetics, but real initiatives did not take place until the 1990s.
A German parliamentary committee recommended in 1987 that the use of genetic
testing for insurance purposes should be prohibited, although it made an exception for
‘ World Medical Association, 44th Assem., World Medical Association Declaration on the Human
Genome Project, Doc. 17 SI1 (1992).
” Universal Declaration on the Human Genome and Hwnan Rights, UNESCO, 29th Sess., 29
C/Resolution 19 (1997) [hereinafter Universal Declaration].
‘S. 7.
“Ss. 5,9.
32Draft World Health Organization (WHO) Guidelines on Bioethics (1999), online: Nature: Interna-
tional Weekly Journal of Science
2000) [hereinafter Draft Guidelines].
33Ibid.
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357
genetic conditions with a certain and determined prognosis.’ In 1989, a Committee of
the Health Council of the Netherlands and the Danish Board of Technology both rec-
ommended that legislation be implemented to deal with the issue. The Dutch report
suggests that limitations to insurers’ right to use genetic data are appropriate, without
excluding the use entirely,’ while the Danish Board states that gene analysis should
never be the basis of insurance underwriting? The latter opinion is expressed in a
1989 resolution of the European Parliament?
In the 1990s in Europe, these calls and formal recommendations resulted in two
approaches: either stringent legislation or the voluntary imposition of a moratorium
by the insurance industry.” The member states of the Council of Europe?9 have re-
cently come under a much stronger obligation to deal with genetic discrimination by
prohibitory legislative measures. On 19 November 1996, the Committee of Ministers
adopted the Convention on Human Rights and BiomedicineI’ which focuses on the
protection of human dignity, identity, and integrity in medicine. The Convention in-
cludes a specific chapter on the human genome project. Article 11 states: “Any form
of discrimination against a person on grounds of his or her genetic heritage is prohib-
ited.” Furthermore, article 12 of the Convention explicitly prescribes that genetic
testing may be performed for health care purposes or for scientific research only. It
W-M. Catenhusen & H. Neumeister, eds., Enquete-Kommission des Deutschen Bundestages,
Chancen und Risiken der Gentechnologie, Dokumentation des Beichts an den Deutschen Bundestag
(Frankfurt: Campus Verlag, 1987), in particular at xxxiv, 173-75.
Heredity, Science and Society: On the Possibilities and Limits of Genetic Testing and Gene Ther-
apy: Report Submitted by a Committee of the Health Council of the Netherlands (The Hague, 1989)
at 133.
Danish Board of Technology, Final Report of the Consensus Conference on the Application of
Knowledge Gained from Mapping the Human Genome (1989).
37EC, Resolution on the ethical and legal problems of genetic Engineering [1989] OJ. C. 96 at 165.
3′ For a more detailed discussion of the international initiatives, see Lemmens & Bahamin, supra
note 18; see also E. Masood, “Gene Tests: Who Benefits from Risk?” (1996) 379 Nature 389.
” The Council of Europe was established in 1949 and has 38 member states. The first major con-
vention adopted by the Council was the 1950 Convention for the Protection of Human Rights and
Fundamental Freedoms. The work of the European Commission on Human Rights and the European
Court of Human Rights, now integrated in one Court of Human Rights has had a major impact in the
development of human rights law in Europe.
(for
4, Council of Europe, Convention for the Protection of Human Rights and Dignity of the Human
Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and
Biomedicine, E.T.S. No. 164 (1997) [hereinafter Convention]. As of December 1, 1999, 28 states have
signed the convention, 6 of which also ratified it. The Convention entered into force on December 1,
1999
Council of Europe,
U.S. statutes and the provisions in the European Convention dealing with genetics and for an inter-
esting discussion of the potential impact of the Convention on insurance issues, see A. Lawton,
“Regulating Genetic Destiny: A Comparative Study of Legal Constraints in Europe and the United
States” (1997) 11 Emory Int. Law Rev. 365.
the Website
information,
updated
of
the
see
” Convention, ibid.,
art. 11.
MCGLL LAW JOURNAL / REVUE DE DROITDE MCGILL
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also specifies that appropriate genetic counselling should be provided. 2 The strict
character of the prohibition against discrimination on genetic grounds is highlighted
by the fact that signatories to the Convention cannot restrict the exercise of the rights
protected by articles 11 and 12. According to article 26(1), states can restrict rights
and protective provisions of the Convention by law and when necessary “in a demo-
cratic society in the interest of public safety, for the prevention of crime, for the pro-
tection of public health or for the protection of the rights and freedoms of others”
These restrictions cannot be imposed, however, on the prohibition to discriminate on
the basis of one’s genetic heritage.
The discussion of article 12 in the Explanatory Report highlights further how the
Convention aims at limiting the use of genetic testing for health care purposes only.
According to the Explanatory Report, article 12 prohibits the carrying out of predic-
tive tests for reasons other than health or health-related research, even with the assent
of the person concerned. It further states that
[ilnsofar as predictive genetic testing, in the case of employment or private in-
surance contracts, does not have a health purpose, it entails a disproportionate
interference in the rights of the individual to privacy. An insurance company
will not be entitled to subject the conclusion or modification of an insurance
policy to the holding of a predictive genetic test. Nor will it be able to refuse
the conclusion or modification of such a policy on the ground that the applicant
has not submitted to a test, as the conclusion of a policy cainot reasonably be
made conditional on the performance of an illegal act.”
In other words, genetic testing without a health care purpose is considered to be un-
lawful per se.
This Convention could have significant consequences. Implementation of the lat-
ter rule in national legislation would mean that insurers could not impose genetic
testing for underwriting purposes, while the former could render it impossible to
make distinctions based on genetic susceptibility.”5 Taken to an extreme, the common
practice of asking insurance applicants about their family history of disease would be-
come unlawful.
This must make the insurance industry nervous, as it could lead to a major over-
haul of current insurance practices. At a 1999 conference on breast cancer genetics,’ a
42 Ibid., art. 12.
41 Council of Europe, Explanatory Report to the Convention for the Protection of Human Rights and
Dignity of the Human Being with Regard to the Application of Biology and Medicine: Convention on
Human Rights and Biomedicine (1997) at para. 85 [hereinafter Explanatory Report].
“Ibid. at para. 86 [emphasis added].
4” The Draft Explanatory Report to the Draft Convention contained a reference to the need for na-
tional law to specify solutions to the risk of adverse selection. The article to which this explanation re-
ferred has not been retained in the final version. For a discussion of this development, see Lawton, su-
pra note 40 at 395-99.
46 Personal Conversation at Crossroads ’99, The Scientific Symposium: Heritable Breast, Ovarian
and Colon Cancer (29 October 1999).
2000]
T LEMMENS – GENETIC DISCRIMINATION AND INSURANCE
359
representative of the Association of British Insurers pointed out that the Explanatory
Report to the Convention refers to “unfair discrimination!’, thereby suggesting that
this leaves the door open for actuarially correct insurance underwriting. The Ex-
planatory Report to the Convention indeed specifies that discrimination must be un-
derstood as unfair discrimination.” However, contrary to what the insurance repre-
sentative suggested, the qualifier “unfair” in the Explanatory Report does not neces-
sarily reflect support for the notion of actuarial fairness as seen by many insurance
experts. The Explanatory Report does not clearly open the door for insurance under-
writing practices but rather seems to aim at allowing positive discrimination or af-
firmative action benefiting those affected by genetic conditions. The Explanatory Re-
port specifies that, “[in particular, it [the article] cannot prohibit positive measures
which may be implemented with the aim of re-establishing a certain balance in favour
of those at a disadvantage because of their genetic inheritance.”‘ While there is no
reference to the insurance context, “a positive measure” could, for example, cover the
use of a negative genetic test result (indicating the absence of a genetic mutation) to
obtain insurance by those who have trouble obtaining coverage because of family
history of disease. This interpretation presupposes that the use of family history is
lawful and is thus not covered under the prohibition against discrimination on grounds
of genetic heritage. While this is not consistent with a strict reading of the text (ge-
netic heritage does include family history of disease), it is in line with current insur-
ance practices in all countries. Considering the fact that the ,exclusion of any distinc-
tion on the basis of family history would conflict so profoundly with current legisla-
tion in most countries, it is reasonable to argue that the notion of “unfair” discrimina-
tion in the explanatory report introduces some form of proportionality assessment.
The explicit proportionality assessment from which article 11 is excluded thus enters
the back door, through the notion of ‘unfair’ discrimination. Unfairness itself is con-
textual in nature. In insurance, as I will argue, the fairness of the distribution of private
insurance goods will depend on the role they play and on the presence of other dis-
tributive mechanisms in society, such as appropriate welfare provisions and universal
health care.
States signing the Convention may make reservations in respect of particular pro-
visions if their existing laws are incompatible with certain sections of the Conven-
tion.” It is to be expected that several states will use this clause to create an exception
for insurance purposes. To date, 28 states have signed the convention and 6 have rati-
fied it. These 6 countries are thus under an obligation to introduce legislation prohib-
iting the use of genetic results for non-medical purposes.
To my knowledge, at least three European countries have already implemented
explicit legislation prohibiting the use of genetic testing for insurance purposes: Aus-
” Explanatory Report, supra note 43 at para. 77.
4 Ib.
“1 Convention, supra note 40, art. 36.
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tria, Belgium and Norway.” These countries introduced their statutes before the adop-
tion of the Convention. In these countries, insurers can neither request genetic testing,
nor use the test results of applicants that are already available in medical records. The
three statutes also contain provisions prohibiting voluntary submission of genetic test
results, thereby making it impossible for applicants to obtain a better premium by
showing a negative test result. The logic of the latter provision is clear, if insurers are
allowed to offer a lower premium or another financial incentive to those who indicate
by voluntarily submitting genetic test results that they are at lower risk for premature
death or disease, the prohibition can be circumvented. Norwegian law further prohib-
its insurers from even asking whether a genetic test has been carried out’
In Den-
mark, the government submitted a similar bill to Parliament, where it was rejected. A
new bill dealing with genetics and insurance is being prepared!’
In the Netherlands, a 1997 statute on medical examinations may pose a barrier to
the use of genetic testing for insurance purposes, without fully excluding it.0 Article 3
provides that a medical examination cannot involve inordinate intrusion into the pri-
vacy of the individual being tested.’ It further provides that a medical examination
cannot be undertaken if the risks of the examination, including the risk of receiving
information on an incurable illness, outweigh the expected benefit” or, more gener-
ally, if the examination would place a disproportionate burden on the individual. The
law thus embraces a proportionality test for the determination of the acceptability of
genetic tests.
This law follows an interesting initiative by the Dutch insurance industry. The in-
surance industry introduced a moratorium in 1990, which was extended in December
1994 for another five years. Under the moratorium, insurers are not allowed to request
access to genetic information unless the contracts exceed a specific limit of around
CDN $140,000. For contracts above this limit, access to genetic information already
available in medical files can be requested, but applicants cannot be required to sub-
mit to genetic tests.
‘ Austria: Federal Law of 1994 (BGBI. No. 510/1994) regulating work with genetically modified
organisms, the release and marketing of genetically modified organisms, and the use of genetic testing
and gene therapy in humans (the Gene Technology Law) and amending the Product Liability Law
(1995) 46 Int’l Dig. Health Legis. 42 at art. 67; Belgium: supra note 1, art. 95; Norway: Law No. 56
of5 August 1994 on the medical use ofbiotechnology (1995) 46 Int’l Dig. Health Legis. 51, s. 6-7.
5, Norway, ibiL
‘2Danish Minister of Labour Bill to prohibit the use of genetic tests in appointments and in under-
writing pensions and insurance; reprinted in Danish Council of Ethics, Ethics and Mapping of the
Human Genome (Copenhagen: Danish Council of Ethics, 1993) at 85-86.
” The Netherlands: Wet van 5juli 1997, houdende regels tot versterking van de rechtspositie van
hen die een medische keuring ondergaan (Staatsblad 1997: 365).
“Ibid., art. 3(1): “Bij een keuring worden geen vragen gesteld en geen medische onderzoeken ver-
richt die een onevenredige inbreuk betekenen op de persoonlijke levenssfeer van de keurling.”
5 1bid., art. 3(2)(a).
Ibid., art. 3(2)(b): “een onevenredig zware belasting’
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T LEMMENS – GENETIC DISCRIMINATION AND INSURANCE
361
In France, the National Ethics Committee (comitd national d’ithique) recom-
mended in October 1995 that insurers be forbidden from using any genetic informa-
tion, even if applicants submit it voluntarily.” A year earlier, a law On respect for the
human body introduced new provisions on genetic testing and DNA identification into
the French Civil Code.? According to article 16-10, the genetic study of the charac-
teristics of a person may be undertaken only for medical purposes or for scientific re-
search. While this seems to prohibit insurers from using genetic tests for underwriting
purposes, it does not prevent insurers from obtaining genetic-test information from
medical files. Under public pressure, however, in 1994 the French Federation of In-
surers imposed a moratorium on its members. The Federation decided that for the
coming five years, genetic testing could not be required from insurance applicants and
that genetic information in medical records could not be the sole basis upon which to
refuse coverage.
More recently, with the publication of a Code of Practice the Association of Brit-
ish Insurers implemented a two-year moratorium! 9 This moratorium was announced
after a critical report of the House of Commons Select Committee on Science and
Technology.’ In its 1995 report, the House Committee ordered the insurance industry
to come up with a satisfactory proposal on genetic testing within one year or else face
legislative restrictions. The industry responded by developing, in 1997, the new Code
of Practice, which contains detailed guidelines with respect to genetics. According to
the industry’s new Code of Practice, insurers cannot ask 1people to undergo genetic
tests when they apply for insurance. It further provides that insurers will not ask for
the results of genetic tests for life insurance contracts that are directly linked to a
mortgage for a private house of up to 100,000. For other contracts it can use genetic
information available to insurance applicants to determine premiums. In this report,
the Association appointed a special independent advisor on genetics whose opinion
would be sought, for example, in the determination of the scientific validity and pre-
dictive power of new genetic tests.
” Comit6 consultatif national d’dthique pour les sciences de ]a vie et de la sant6, “Avis et recom-
mandations sur Ginitique et Midecine: de la prediction a la privention” (30 October 1995), online:
Comit6 consultatif national d’6thique pour les sciences de Ia vie et de la sant6
“L’utilisation des r6sultats d’un examen des caractdristiques g~n~tiques, A des fins autres que m&lica-
les ou de recherche, par exemple dans le cadre d’un contrat d’assurance ou de ’emploi, est interdite,
meme si elIe est le fait des sujets test6s eux-memes ou qu’elle se fait avee leur accord:’
” Law No. 94-653 of 29 July 1994 on respect for the humnan body (Journal officiel de la Rdpublique
franfaise, Lois et D&rets, 30 July 1994, No. 175, pp. 11056-11059).
59Association of British Insurers, Genetic Testing: ABI Code of Practice (1997).
SU.K., H.C., Science and Technology Committee, “Human Genetics: The Science and Its Conse-
quences”, 3d report, vol. 1 (1995).
62 This provision is of particular importance because in the U.K. life insurance is a precondition to
obtaining a mortgage for a house. Being excluded from life insurance thus also excludes people from
access to ownership. See below for a discussion of this clause.
MCGILL LAW JOURNAL / REVUE DE DROIT DE MCGILL
[Vol. 45
VI. Genetic Discrimination Legislation in the United States
In the United States, as of January 15, 1999, at least 44 states enacted specific
legislation regulating the use of genetic data by insurers, either in the form of genetic
discrimination statutes, genetic privacy statutes or a combination of both.’ Most of the
state statutes deal exclusively with health insurance contracts to the exclusion of life
and disability insurance. They generally prohibit insurers from excluding or raising
insurance premiums for those who have a genetic mutation that puts them at increased
risk for disease. They further provide that insurers should not require insurance appli-
cants to submit to genetic testing. Some of the older statutes on genetic discrimination
aim at protecting people affected by particular genetic conditions, such as sickle-cell
trait. On the federal level, calls for protection against genetic discrimination have mo-
tivated several representatives and senators to propose comprehensive federal legisla-
tion in this area.’ The American Congress has enacted the Health Insurance Portabil-
ity and Accountability Act of 1996, which provides some protection against genetic
discrimination in the context of health care.”
VII. Genetic Privacy Acts
A second approach to controlling access to genetic information has been to stress
the need for privacy legislation. The need for privacy and for protection against un-
wanted breaches of confidentiality of health information is increasingly recognized as
a major concern. Many countries, states and provinces have introduced general pri-
vacy legislation or are in the process of doing so. In 1993, Quebec became the first
Canadian province to enact comprehensive privacy legislation, both for the private
and public sectors.” In Europe, both the European Community and the Council of
6 See W.F. Mulholland & A.S. Jaeger, “Genetic Privacy and Discrimination: A Survey of State
Legislation” (1999) 39 Jurimetrics 317; this article contains a comparative list of the state legislation.
See also Yesley, supra note 27; M.A. Jagutis, “Insurer’s Access to Genetic Information: The Call for
Comprehensive Federal Legislation” (1999) 82 Marquette L. Rev. 429; L.E. Egan, “Genetic Dis-
crimination in Health Insurance” (1998) 24 J. Legis. 237. A comparative list is also published and up-
dated by the National Cancer Institute, online: National Cancer Institute
(date accessed: 8 January 2000). To have an idea of the changes in the last three years, compare with
H.R. Davis & LV. Mitrius, “Note: Recent Legislation on Genetics and Insurance” (1996) 37 Ju-
rimetrics 69.
” See Jagutis, ibid, at 441-45; Egan, ibid. at 244-46; K.H. Rothenberg, “Breast Cancer, the Genetic
‘Quick Fix, and the Jewish Community” (1997) 7 Health Matrix 97 at 110-13; B.P. Fuller et aL, “Pri-
vacy in Genetics Research” (1999) 285 Science 1359.
“Health Insurance Portability and Accountability Act of 1996, Pub. L. No. 104-191, 110 Stat.
1936.
3An Act respecting access to documents Ield by public bodies and the protection of personal in-
formation, R.S.Q. c. A-2.1; An Act respecting the protection of personal information in the private
sector, R.S.Q. c. P-39. 1. For a discussion of this legislation on the private sector in the context of ge-
netics, see P. Bahamin, “La gdndtique et ]a protection de la vie prive: confrontation de la legislation
qu6b6coise au concept du droit A ]a vie privde” (1995) 55 R. du B. 203; Lemmens & Bahamin, supra
note 18 at 231-39.
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T LEMMENS – GENETIC DISCRIMINATION AND INSURANCE
Europe adopted regulatory measures on privacy. Within the European Community,
states are bound by the Directive on the Protection of Individuals with Regard to the
Processing of Personal Data and on the Other Free Movement of Such Data.’ This
imposes a duty on member states of the European Community to implement appro-
priate privacy legislation, in line with the rules set out in the Directive. Signatories to
the Council of Europe’s Convention for the Protection of Individuals with regard to
Automatic Processing of Data are also bound to establish legislation that is consistent
with the Convention’s principles. Several countries have specific laws dealing with
privacy of medical data in general.
Many authors have recognized that new discoveries in genetics, combined with
ongoing developments in computer technology and communication, render it more
necessary than ever to implement strict data safety measures. Policy advisors, legal
experts, and the insurance industry all seem to recognize the importance of privacy
protection in the context of genetics even though their views on how to obtain the best
protection may differ.” Indeed, it is not only the Canadian Privacy Commissioner who
recommends that adequate protection of genetic information is urgently needed.
Representatives of the industry agree. The American Council of Life Insurance cau-
tioned the insurance industry as early as 1991–clearly from a utilitarian perspec-
tive-that “[it] would be well advised to think ahead in terms of confidentiality ex-
pectations of its insurance-buying public and the increased concerns that thus far have
been raised by the media, consumer groups and others” Sandy Lowden, a genetics
expert and former medical director of a leading insurance company, also argues that
there is a need for better privacy protection, even though he opposes restrictions on
the use of genetics for insurance underwriting. According to him, medical files often
end up in the files of insurance brokers, who shop around for insurance contracts and
who are not bound by the confidentiality procedures of the major insurance compa-
nies. Moreover, many companies do not have documented confidentiality procedures.
6For a discussion of European legislation, see P.M. Schwartz, “European Data Protection Law and
Medical Privacy” in M.A. Rothstein, ed., Genetic Secrets: Protecting Privacy and Confidentiality in
the Genetic Era (New Haven: Yale University Press, 1997) 392 [hereinafter Genetic Secrets].
67 Council of Europe, Convention for the Protection of Individuals with regard to Automatic Proc-
essing of Personal Data, E.T.S. No. 108 (1981).
6′ President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Be-
havioural Research, Screening and Counseling for Genetic Conditions: A Report on the Ethica4 So-
cial, and Legal Implications of Genetic Screening, Counselling, and Education Programs (Washing-
ton: U.S. Government Printing Office, 1983) (e.g. at 42); Privacy Commissioner of Canada, Genetic
Testing and Privacy (1992); NIH-DOE Working Group on Ethical, Legal, and Social Implications of
Human Genome Research, Genetic Information and Health Insurance: Report of the Task Force on
Genetic Information and Insurance (1993); American Council of Life Insurance, Genetic Test Infor-
mation and Insurance: Confidentiality Concerns and Recommendations: Report of the ACL Sub-
committee on Privacy Legislation to the Task Force on Genetic Testing (1991); L.O. Gostin, “Genetic
Privacy” (1995) 23 J. L., Med. & Ethics 320.
“Privacy Commissioner of Canada, ibid.
“American Council of Life Insurance, supra note 68 at 2.
MCGILL LAW JOURNAL/REVUE DE DROIT DE MCGILL
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This situation, he claims, clearly requires particular attention by privacy regulators.’
Notwithstanding this degree of agreement among members of the insurance industry,
privacy legislation focusing on genetics has not been developed in Europe or Canada.
In contrast, as I mentioned earlier, some of the American states that introduced
legislation with respect to genetic testing also included provisions to protect the pri-
vacy of genetic data. Others focus on the protection of privacy, rather than preventing
genetic discrimination. In an effort to further push for privacy protection legislation,
George Annas, Leonard Glantz, and Patricia Roche drafted a model Genetic Privacy
Act,” which has inspired several of the federal legislative initiatives in this area.m ”
VIII. Why Legislative Initiatives Focusing on Genetics?
More than just ethical concerns about one’s right to control highly personal in-
formation and the right to self-determination underlie the attention to confidentiality
of genetic data. There is a very practical explanation for the interest of the research
community in this matter: people have been reluctant to participate in research for
fear of discrimination if test results were to indicate an increased risk. Several studies,
for example, have indicated that women at risk for breast cancer because of family
history often refuse to undergo testing out of fear of the impact of testing on insur-
ability.” With genetic testing becoming a veritable diagnostic tool, clinicians are also
becoming concerned that the health care of patients could be adversely affected if
they were not to be reassured as to the confidentiality of genetic testing.’ National ac-
tion groups have lobbied hard to improve the protection of people who could be af-
fected by genetic discrimination, and their lobbies have often met with success. Fran-
cis Collins, for example, points out that the Clinton administration largely followed
recommendations made by the National Action Plan on Breast Cancer’ when it
pushed for congressional action. The lobby resulted in the Health Insurance Portabil-
” J.A. Lowden, “Genetic Testing and Screening in Insurance Underwriting!’ in Genetics and the
Law Symposium 21 October 1995 (Toronto: Osgoode Hall, 1995).
” G.J. Annas, L.H. Glantz & P.A. Roche, The Genetic Privacy Act and Commentary (Boston: Bos-
ton University School of Public Health, 1995) [hereinafter Genetic Privacy Act & Commentary]. See
also G.J. Annas, L.H. Glantz & P.A. Roche, ‘Drafting the Genetic Privacy Act: Science, Policy and
Practical Considerations” (1995) 23 J. L., Med. & Ethics 360 [hereinafter “Drafting the Genetic Pri-
vacy Act”].
” Senator Peter V. Domenici, for example, introduced in 1996 a bill entitled “Genetic Privacy and
Nondiscrimination Act of 1996″ (S. 1898, 104 Cong. (1996)), which was inspired by this model Ge-
netic Privacy Act.
” See RB. Jacobsen et al., “Decision-Making About Genetic Testing Among Women at Familial
Risk for Breast Cancer” (1997) 59 Psychosom. Med. 459 at 460 and references there.
” “Certificates of Confidentiality”, supra note 13 at 436-37; “Genetic Discrimination”, supra note
22; C. Lerman et al., “BRCAI Testing in Families With Hereditary Breast-Ovarian Cancer: A Pro-
spective Study of Patient Decision Making and Outcomes” (1996) 275 J. Am. Med. Assoc. 1885.
76 The National Action Plan on Breast Cancer is a public-private partnership set up to promote re-
search, policy and services in the area of breast cancer.
2000]
T LEMMENS – GENETIC DISCRIMINATION AND INSURANCE
365
ity and Accountability Act of 1996.’ Meredith A. Jagutis, who does not disguise her
discomfort with the panoply of genetic privacy statutes, remarks that “five organiza-
tions typically support the bills, including the American Cancer Society, the National
Breast Cancer Coalition, the Council for Responsible Genetics, the National Action
Plan on Breast Cancer, and the National Advisory Council for Human Genome Re-
search:’
In light of this, one wonders whether it is a matter of pure happenstance that the
proliferation of legislative initiatives on genetic privacy and discrimination coincide
with concerns raised by the medical establishment that fear of discrimination and pri-
vacy could hamper genetics research. In an effort to explain what he perceives to be
disproportionate attention to laws focusing on insurance in the context of genetics,
Mark Hall speculates “that leading scientific researchers view insurance discrimina-
tion as a barrier to recruiting research subjects.'” Michael S. Yesley states in the same
vein that “[t]he laws barring genetic discrimination in health insurance do not respond
to a substantial problem but to a perceived threat of loss of insurance that might hin-
der genetic researchers’ search for human subjects”‘ A recent article in Science by
members of a subcommittee of the National Action Plan on Breast Cancer confirms
this. Throughout the article, which contains detailed recommendations to protect pri-
vacy in genetic research, the authors urge for stringent privacy legislation because of
“[tlhe social value of research, the altruistic nature of research participation, and the
reliance of the research enterprise on volunteers.”
There might be yet another reason for the legislative vogue. Genetic discrimina-
tion is more likely to affect those who currently have insurance and, in the United
States, have appropriate access to health care. These are the people who are most
likely to have access to the new genetic tools that their physicians will want to use for
diagnostic or predictive purposes. Genetic testing, and the possibility of being ex-
cluded from insurance on the basis of test results, will have a much greater impact on
their lives than on the lives of those people excluded from health care altogether.
Compare the plight of the insured with, say, that of a street person who is struggling
to survive. Exclusion from insurance as a result of genetic testing is clearly more of a
concern for the “better off’. These are the same people who are more likely to have
influence on the regulatory process. Can one have a more powerful alliance than the
Supra note 64.
7’Supra note 62 at 442.
M.A. Hall, ‘Insurers’ Use of Genetic Information” (1996) 37 Jurimetrics 13 at 14. He also won-
ders whether “biotechnology firms support insurance legislation because they realize that peoples’
fear of losing insurance could squelch the booming commercial opportunities in testing technology:’
(Ibid) However, the latter seems not so likely. On the contrary, the biotechnology industry would have
a major financial interest in promoting genetic testing outside the medical context. Insurance compa-
nies could be among the best clients of this industry.
Yesley, supra note 27 at 663.
“Fuller et aL, supra note 63 [emphasis added].
366
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medical and social establishment, and perhaps even the biotechnology industry, join-
ing forces?
A detailed discussion of these initiatives is beyond the scope of this paper.n’ I
would like here to comment briefly on both genetic privacy legislation and genetic
discrimination provisions. Two questions are of primary importance in judging this
approach: first, is this type of legislation effective and, second, is it fair to have legis-
lation that focuses on one particular type of medical information and gives it better
protection? These questions are related, in turn, to the issue of whether one can single
out genetic data from other forms of health information, on a practical basis as well as
on ethical grounds.
IX. The Efficacy of Statutes Focusing on Genetics
Although the previous discussion suggests that privacy legislation is urgently
needed, it does not mean that this need came about with the advent of genetic data. In
fact, privacy issues are of concern regardless of the precise nature of the medical in-
formation. While many medical data are either trivial or obvious (like physical char-
acteristics of a person and visible disabilities), there are a great number of other data
that should be protected from public distribution and that people want to keep confi-
dential. People who are or have been suffering from a socially stigmatizing disease,
for example, generally do not want information related to tfieir condition to be freely
distributed among insurance brokers. Few would be happy to learn that information
on one’s HIV-positive status, one’s history of depression, or information on past sex-
ual abuse is easily accessible. In this context, genetic information is not very different
from other medical information. It belongs among existing concerns. As such, it
would seem to be most appropriate to deal with the most basic concern for the pro-
tection of all sensitive medical data, rather than deal with genetic information and
leave other sensitive data less protected.
Moreover, many genetic privacy acts make vague references to the risk of genetic
discrimination or express a concern for discrimination as one of the motivating factors
for having genetic privacy legislation, without providing protection against it. Annas,
Glantz, and Roche, for example, mention in the preamble of their widely cited Draft
Genetic Privacy Act that employers and insurers could be interested in this type of in-
formation.” They also mention, as one of the main reasons for regulating genetic in-
formation, the history of discrimination against the genetically unfit. Since this con-
cern is expressed in the preamble of a legislative proposal, one would expect that the
proposed legislation would offer appropriate protection against discrimination. It does
not. While many of the privacy statutes or legislative proposals contain rules restrict-
For detailed discussions of these initiatives, see supra note 62.
‘3Annas, Glantz, and Roche simply mention that employers and insurers could be interested in this
type of information. See the discussion of their Draft Act in “Drafting the Genetic Privacy Act”, supra
note 72.
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ing unauthorized distribution, they generally do not protect against the biggest threat
for discrimination, the authorized distribution of information. This is an even greater
concern in the context of a system such as insurance, which is based on contractual
liberty and largely ignores the unequal bargaining position of insurer and insurance
applicant. Privacy acts are based on the right to self-determination and introduce a
system whereby individuals remain in control over information pertaining to them. As
Mark A. Hall points out, ‘Ie premise of privacy is individual control of the informa-
tion. Control means the right both to conceal and reveal the information.”” In the in-
surance context, however, applicants are not in a position to bargain about access to
information. If insurance companies ask applicants to sign a waiver of confidentiality
as a condition for insurance, there is little in the way of choice: ultimately applicants
will sign.
The same is true for requests to undergo genetic testing. The right to refuse ge-
netic testing provides little protection. Yesley points out that “[m]erely requiring in-
formed consent for genetic testing will not prevent an employer or insurer from in-
sisting on testing as a condition of employment or insurance” Privacy laws provide
no protection against authorized, freely accepted discrimination.” In other words,
people are generally not excluded from insurance coverage on the basis of quasi-
secret searches for medical data and violations of privacy. Exclusions are based on in-
formation gained from legally sanctioned access to medical files or freely undertaken
medical tests that indicate a higher than average risk for disease.
X. What is “Genetic Data”?
The determination of what exactly constitutes genetic data is also a concern that is
insufficiently addressed in the context of both privacy laws and anti-discrimination
provisions. What indeed is the focus of these statutes or proposals for legislation? The
Draft Genetic Privacy Act of Annas, Glantz, and Roche, for example, only protects
private genetic information, which it defines as
any information about an identifiable individual that is derived from the pres-
ence, absence, alteration, or mutation of a gene or genes, or the presence or ab-
sence of a specific DNA marker or markers, and which has been obtained: (1)
from an analysis of the individual’s DNA; or (2) from an analysis of the DNA
of a person to whom the individual is related.
Hall, supra note 79 at 19-20 ×..
Yesley, supra note 27 at 658.
It should not come as a surprise that insurance experts tend to argue in favour of the right of indi-
viduals to access genetic data that are obtained in the course of research empowering individuals in
this context also makes it possible for insurance companies to obtain access to these data.
S. 3. Definitions, see Genetic Privacy Act & Commentary, supra note 72 at 45.
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The drafters explain that not all genetic information needs protection. More impor-
tantly, they also declare that by including protein tests and family history-based risk
information in the definition of private genetic information, virtually all medical rec-
ords would be subject to the provisions of the act. This, they suggest, is clearly not
feasible. In an article on their drafting process, they even admit” (ruefully, as Murray
remarks with some irony) that including these data in the definition would make the
distinction between genetic information and medical information generally more dif-
ficult to justify.’ Although they defend their decision in stating that they had a clear
mandate to draft privacy rules focusing on genetic information derived within the
Human Genome Project, the lack of a coherent rationale remains nonetheless ques-
tionable.
As several authors have pointed out, many statutes dealing with genetic informa-
tion suffer from similar problems of definition.’ They are often seriously narrow or
overly general and unworkable. Some of the older anti-discrimination statutes prohibit
discrimination only when it relates to specific genetic conditions. Others limit the
scope of the anti-discrimination provisions to the results of genetic tests, which are
defined as DNA analyses. They do not cover, for example, family history of disease.’
As mentioned earlier, the Austrian, Belgian, and Norwegian statutes also fail to pro-
hibit the use of family history in the context of insurance. ‘ This basically means that
insurers can exclude people on the basis of vague family information indicating the
presence of a genetic condition in the family, whereas they’could not rely on similar
more detailed information resulting from DNA analysis. Moreover, the Norwegian
statute specifies that while the use of data from predictive genetic testing in under-
writing is not permissible, information obtained through genetic tests used as diag-
nostic tools for existing diseases can be taken into consideration.
In criticizing a bill which proposed similar rules, the Danish Council of Ethics
pointed out that it has long been possible to obtain information on the likelihood of
future disease, susceptibility to external factors, or possession of certain genes.” In
other words, by further allowing these practices and by focusing exclusively on newer
” Proteins are gene products. They tell us something about the functioning of particular genes. Ir-
regular protein production can be a clear indication of ill-functioning genes.
Genetic Privacy Act & Commentary, supra note 72 at 48.
T.H. Murray, “Genetic Exceptionalism and ‘Future Diaries’: Is Genetic Information Different
from Other Medical Information?” in Genetic Secrets, supra note 66 at 68.
“”Drafting
the Genetic Privacy Ac’, supra note 72.
See Yesley, supra note 27 at 659-62; “Genetic Antidiscrimination”, supra note 7 at 207-08; Jagu-
tis, supra note 62 at 436-38.
” See M.A. Rothstein, B.D. Gelb & S.G. Craig, “Protecting Genetic Privacy by Permitting Em-
ployer Access only to Job-related Employee Medical Information: Analysis of a Unique Minnesota
Law” (1998) 24 Am. J. L. & Med. 399 at 402-03. Rothstein mentions a new New Jersey statute deal-
ing with genetic discrimination which does include in its definition “inherited characteristics derived
from an individual or family member” (ib
at n. 43).
Supra note 50.
“Danish Council of Ethics, supra note 52 at 80.
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forms of genetic testing, discrimination is not adequately prevented. Other critics of
the Danish bill also argued that the regulation of genetic testing in the bill is inade-
quate, since similar methods can produce the same results.’
Genetic information will be an increasingly important component of medical
files. The results of genetic tests will be intermingled with other data. Often, results of
clear-cut DNA tests will be accompanied by protein tests and family histories in
medical files. These tests might indirectly tell insurers all they could know directly
from a genetic test: that a specific gene function is affected, and that the reason for
this deviant protein production is a condition running in the family. Jon Beckwith and
Joseph S. Alper point out that “some would argue that most medical tests are ordered
in an effort to detect conditions or potential conditions that have an underlying genetic
contribution'” In another article, Alper and Beckwith clearly indicate, with different
examples, how difficult it is to maintain a distinction between genetic and non-genetic
tests. ” They conclude that “in concentrating on the genetic nature of the information
rather than on the consequences of the dissemination of all types of medical informa-
tion, the [genetic anti-discrimination] legislation relies on a distinction between ge-
netic and nongenetic information that is essentially artificial:”‘
Indeed, would it make sense to provide particular privacy or anti-discrimination
protection to some test results while other results, giving similar information on future
risk, are freely accessible? This certainly cannot be considered an effective way of
protecting privacy or preventing discrimination.
Xl. The Claim of Genetic Exceptionalism
The anti-discrimination and privacy laws focusing on genetics have one thing in
common; they reflect the idea that specific legislation focusing on genetics is essential
and appropriate. One cannot avoid asking: why is this so? What is the motive behind
laws and regulations focusing exclusively on genetic information? It is granted that
these anti-discrimination and privacy provisions provide some, albeit limited and par-
tial, protection against discrimination. But what is the justification for partial protec-
tion? Is there a coherent reason to single out genetics? This question deals with what
Thomas Murray calls “genetic exceptionalism”-the claim that there is something so
unique about genetics that it merits special legislation.”‘
“L. Nielsen & S. Nespor, Genetic Test, Screening and Use of Genetic Data by Public Authorities in
Criminal Justice, Social Security and Alien and Foreigners Acts (Copenhagen: University of Copen-
hagen, 1993) at 23.
“Genetic Antidiscrimination”, supra note 7 at 207.
J.S. Alper & J. Beckwith, “Distinguishing Genetic From Nongenetic Medical Tests: Some Impli-
cations for Antidiscrimination Legislation” (1998) 4 Sci. Eng. Ethics 141 at 145 [hereinafter “Distin-
guishing Genetic From Nongenetic”].
” Murray, supra note 90.
9Ibid.
at 148.
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Murray identifies four different elements of genetics exceptionalism: genetic
prophecy, concern for kin, concern about discrimination, and generalizability of data
to families, communities, racial, and ethnic populations. A fifth characteristic, which
is not discussed as a separate issue by Murray, but which is often invoked in the con-
text of genetics’ claim to uniqueness, is the lack of control over one’s genome.”‘
Murray refers to the claim that genetics is unique because it reveals sensitive and
detailed information about someone’s future health risks as “the concern for genetic
prophecy.” Genetic information indicates a factor of risk. It enables us to give an esti-
mate of the future possibility of disease and is not limited to an analysis of current
health. It allows third parties to obtain detailed information on the likelihood that in-
dividuals will be affected by a particular condition. Since someone’s health condition
has financial implications, employers, insurers, and even immigration authorities
could be particularly inclined to use this type of health predictor. However, as Murray
and others indicate, genetic testing is not the only tool with which to evaluate people’s
future health prospects.” Information gathered from questionnaires about family dis-
eases or habits, or medical tests indicating high cholesterol levels, are examples of
other tests or methods that give similar information. Murray mentions other potential
sources of probabilistic information. Some people engage in risky activities such as
skydiving or parasailing, while others suffer from hepatitis B or HIV infection. The
comparison between a positive HIV test result and genetic test results is particularly
interesting. In the past, HIV testing was often seen as somefiow fundamentally differ-
ent from genetic testing. Finding out one’s HIV-positive status was considered to be
very much like a diagnosis of actual or at least imminent and unavoidable disease. A
positive test result brought to fact the prospect of a certain and swift death. As Per
Sandberg points out, the distinction between genetic predisposition and HIV infection
no longer holds.” Many people who are infected with HIV now survive for more than
ten years. It is still unclear how long life can be prolonged for those who are currently
infected and have access to experimental drugs. Research further suggests that some
HIV-infected people might not even develop the disease. An HIV-positive test might
become less predictive of early death than a test for, say, Huntington’s disease.
It also seems inappropriate to invoke in general terms the probabilistic nature of
genetics to distinguish it from other medical information. There is no such thing as the
“‘ Hall, supra note 79 at 19-20 mentions as a special characteristic the fact that genetic information
is “uniquely private.” It is unclear what he understands under this argument, since he discusses the
concern for privacy in this context. However, this is clearly not specific to genetics. Many other forms
of health information are considered to be of particular private concern. Genetic information is, on the
contrary, particular because it is shared. It reveals information on other family members and perhaps
even one’s ethnic group. He may be referring here to the fact that genetic information tells us so
much, in so much detail, about an individual, in particular one’s risk for premature death or disability.
For this, see below.
” Murray, supra note 90; see e.g. “Distinguishing Genetic From Nongenetic”, supra note 98.
“‘P. Sandberg, “Genetic Information and Life Insurance: A Proposal for an Ethical European Pol-
icy” (1995) 40 Soc. Sei. Med. 1549 at 1550-51.
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genetic test result. There are several kinds of genetic disorders, with fundamental dif-
them. Some genetic disorders come to affect people with
ferences between
near-certainty. The paradigm case for such a disorder is Huntington’s disease, a late-
onset dominant and single-gene disorder. Having the genetic mutation generally im-
plies that one will develop the disease.’ Others indicate only an increased chance of
developing a disease and are either related to a single genetic mutation or to complex
polymorphisms. The risk factors associated with these disorders and the statistical re-
liability of the tests vary significantly from disorder to disorder. Some diseases are
curable or controllable; others can perhaps be avoided by changes in diet or lifestyles.
Still other diseases are incurable, leading inevitably to physical decline and death. The
common name for a disease might cover several different types of that disease. Some
breast cancers are associated with a single gene, while others are complex traits for
which no tests are currently available. The genetic determinants of a disease are also
often overstated to the detriment of other factors. As Alper and Beckwith indicate,
“the environment, gene-environment covariance, and gene-environment interactions
can be as important as genes and gene-gene interactions in determining the expression
of these conditions.””‘
The predictive value of genetic tests varies widely. Moreover, the prophetic char-
acter of genetic testing is often overstated in the early phases of research, further in-
flating its uniqueness in comparison with other health predictors. For example, early
estimates of the predictive value of genetic tests for two breast cancer related genes,
BRCA1 and BRCA2, were significantly higher than now. Women who carry BRCAl
were first estimated to have an 85% lifetime chance of developing breast cancer and a
40% risk of ovarian cancer.” A more recent estimate based on a more population-
based (as opposed to family-based) study suggests that there may be a 60% risk that
people with the mutation will develop breast cancer by the age of 70.0″
The concern for kin arises because of genetic links between family members. Ge-
netic information traverses the bounds of personal autonomy, ‘ insofar as genetic tests
necessarily reveal information about the family of those who undergo testing.’ ‘ This
characteristic of genetics and genetic testing has important ramifications with respect
to issues of confidentiality, the ethical duty to collaborate in family studies, the duty to
But see “Genetic Antidiscrimination”, supra note 7 at 208. They refer to some studies which in-
dicate that some people with the Huntington gene do not develop the disease: see their n. 25. See also
below.
“Distinguishing Genetic From Nongenetic”, supra note 98 at 146.
‘ J.P. Struewing et al., “The Carrier Frequency of the BRCAI 185delAG Mutation is Approxi-
mately 1 Percent in Ashkenazi Jewish Individuals (1995) 11 Nature Genetics 198 at 198.
7 See Weber, supra note 14.
” A.M Capron, “Which Ills to Bear? Reevaluating the ‘Threat’ of Modem Genetics” (1990) 39
Emory L.J. 665 at 694.
‘ For a discussion of the ramifications of the family relevance of information in the context of re-
search, see K.C. Glass et aL, “Structuring the Review of Human Genetics Protocols: Gene Localiza-
tion and Identification Studies” (1996) 18 IRB: A Review of Human Subjects Research 1 at 5-6.
MCGILL LAW JOURNAL/REVUE DE DROIT DE MCGILL
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inform or disclose to family members information of genetic risks, informed consent
with respect to accidental discoveries of non-paternity or non-maternity, and so on.”‘
Discussion of these important legal and ethical issues is beyond the scope of this arti-
cle.
While there are certainly important familial issues surrounding genetic testing,
Murray is right in arguing that many other types of information raise similar issues.
The fact that a person is suffering from tuberculosis tells us something about the risk
for infection of people living in the same household. When someone has a gambling
problem, the family’s financial security may be in jeopardy. What if the “breadwin-
ner” in the family has a serious heart disease? Murray suggests that surely other fam-
ily members have an interest in knowing about it. And when a person is suffering
from a sexually transmitted disease, sexual partners are at risk. A recent case before
the British Columbia Human Rights Commission is interesting in respect to the latter
example. The case was that of a man whose application for life insurance was rejected
because his wife was infected with HIVIAIDS. The Commission declared, among
other things, that this was a case of discrimination based on “the propensity for be-
coming disabled” and as such constituted a violation of the Human Rights Act of
British Columbia.”‘
These examples clearly raise issues with respect to the duty to inform others, the
duty to reveal troublesome information and the duty to collaborate in treatment pro-
grams. Moreover, in the context of insurance, it is worth stressing again that insurers
have traditionally been keen to investigate the existence of diseases running in the
family. Even on the basis of information gathered through traditional channels-by its
nature, is more uncertain than information gathered from genetic tests-family mem-
bers are denied coverage or charged higher premiums. In other words, genetic infor-
mation with implications for family members has already been gathered long before
the existence of modem genetic tests. It seems difficult, therefore, to argue that ge-
netic tests raise entirely new and unique ethical and legal questions in this respect.
A third characteristic often invoked to emphasize genetic exceptionalism is its
relevance for populations: ethnic, racial, or local groups. Genetic information links
members, not only of families, but also of larger communities. Genetic diseases are
“” See e.g. E.W. Clayton, “What Should the Law Say About Disclosure of Genetic Information to
Relatives?” (1998) 1 J. Health Care Law Pol’y 373; C. Lerman et al., “Family Disclosure in Genetic
Testing for Cancer Susceptibility: Deterninants and Consequences” (1998) J. Health Care Law Pol’y
353; M.M. Burgess, C.M. Laberge & B.M. Knoppers, “Bioethics for Clinicians: 14. Ethics and Ge-
netics in Medicine” (1998) 158 C. Med. Assoc. J. 1309; W.F. Flanagan, “Genetic Data and Medical
Confidentiality” (1995) 3 Health L.J 269; J. Miller, “Physician-Patient Confidentiality and Familial
Access to Genetic Information” (1994) 2 Health LJ. 141; B.M. Knoppers, “Human Genetics: Paren-
tal, Professional and Political Responsibility” (1993) 1 Health LJ. 13; S.M. Suter, “Whose Genes Are
These Anyway? Familial Conflicts over Access to Genetic Information” (1993) 91 Mich. L. Rev.
1854; D.C. Wertz & J.C. Fletcher, “Privacy and Disclosure in Medical Genetics Examined in an Eth-
ics of Care” (1991) 5:3 Bioethics 212.
. R.S.B.C. 1996, c. 210 [hereinafter BCHRA].
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373
sometimes over-represented in some ethnic groups, or in specific local communities.
Tay-Sachs disease, for example, is common among Ashkenazi Jews and some French
Canadians.”- Among the former, 1 in 30 carries a gene for this very severe recessive
disorder that affects 1 in 3,600 of their infants. Many Ashkenazi Jews are also carriers
of Gaucher’s disease. Recent research has highlighted three specific mutations that are
particularly prevalent in Ashkenazi Jewish women. Women in this community who
have a family history of breast cancer are at higher risk of developing cancer than
women of other ethnic groups. “‘ The sickle-cell trait has a very high incidence among
Africans and people of African origin. In the U.S., from 8% to 10% of African-
Americans are carriers of the sickle-cell trait, and 1 in 400 to 600 has sickle-cell
anaemia.”‘ Several genetic disorders are said
the Sa-
guenay-Lac-Saint-Jean region of Quebec.’5
to be prevalent
in
The prevalence of genetic disorders within communities can result in further
stigmatization of groups already affected by racial or ethnic discrimination.”‘ Screen-
ing programs and government interventions are sometimes interpreted as evidence of
racism, especially when they lead to the denial of employment or insurance. Substan-
tial controversy has already arisen over sickle-cell screening: in the 1970s in the
United States, massive sickle-cell screening, which was introduced as a health care
program, led to discrimination against African-Americans. Many African-Americans
identified as carrying the sickle-cell trait were excluded from a variety of occupational
settings as a result of protective measures that were based on what later appeared to be
erroneous scientific grounds-the theory that carriers of the genetic trait are at risk for
losing consciousness as a result of exposure to low oxygen levels.”‘ Other types of
“.2 Science Council of Canada, Genetics in Canadian Health Care (Ottawa: Minister of Supply and
Services, 1991) at 42.
“‘ See S.V. Hodgson et al., “Risk Factors for Detecting Germline BRCA1 and BRCA2 Founder
Mutations in Ashkenazi Jewish Women with Breast or Ovarian Cancer” (1999) 36 J. Med. Genet.
369; see also Struewing et aL, supra note 106.
‘ According to the Science Council of Canada, one in every 625 African-Canadian newborns has
sickle-cell anaemia: supra note 112 at 20.
“s M.. M6Ianqon & D. Larouche, “Une rflexion r6gionale et transrgionale sur l’dthique en g6n6-
tique humaine” in MJ. M61anqon, ed., Biodthique et ge’nitique: Une riflexion collective (Chicoutimi,
Qc.: Editions JCL, 1994) 17; M. Perron, “Les maladies h&&idtaires au Saguenay-Lac-Saint-Jean: Re-
sponsabilit6 individuelle ou collective?” in ibid 43; M. De Braekeleer, “The Ethics of Cystic Fibrosis
Carrier Screening: Where Do We Stand?” Letter to the Editor (1990) 47:3 Am. J. Hum. Gen.
581-582.
“6 See H.T. Greely, “Health Insurance, Employment Discrimination, and the Genetics Revolution”
in DJ. Kevles & L. Hood, eds., The Code of Codes: Scientific and Social Issues in the Human Ge-
nome Project (Cambridge, Mass.: Harvard University Press, 1992) 264 at 274-280; Natowicz, Alper
& Alper, supra note 6. For a discussion of American law in relation to discrimination and workplace
screening, see “Genetic Discrimination”, supra note 22 at 120-34.
“.. For a discussion on the controversy surrounding sickle-cell screening, see D.J. Kevles, In the
Name of Eugenics: Genetics and the Uses of Human Heredity (New York: Alfred A. Knopf, 1985)
255-56, 278; L.B. Andrews et al., eds., Assessing Genetic Risks: Implications for Health and Social
Policy (Washington, D.C.: National Academy Press, 1994) at 40-42,258.
MCGILL LAW JOURNAL /REVUE DE DROITDE MCGILL
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discrimination, too, could be provoked by the use of genetic testing. Some behavioral
genetics’ research has already raised substantial controversy because of the links
made between ethnicity and, for example, intelligence and criminality.'” In light of the
often vague diagnostic criteria for assessing mental illness, there is also concern that
ethnic and racial bias may influence research questions and the interpretation of data
and that the results of such studies may contribute to further stigmatization.
Fear of stigmatization and discrimination could affect the willingness of these
groups to co-operate with research or with preventive screening programs. Willing-
ness to co-operate with extremely revealing research could actually aggravate the
stigma of belonging to a particularly diseased group. Genetic traits can be more easily
identified in isolated regions with a “genetically isolated” population than elsewhere.
Intense scientific research could exaggerate the prevalence of particular diseases in
these communities, compared to other groups. Specific groups could become victims
of their scientific importance. This has been perceived as unfair, especially insofar as
these groups often serve in scientific studies that are of great value for the entire
population.
Mark Rothstein invokes the history of eugenics in this context. “[G]iven the his-
tory of eugenics:’ Rothstein argues, “there is a justifiable reticence to embrace any
program of systematic application of genetic criteria!””‘ This history places upon re-
searchers and health care promoters the burden of demonstrating the necessity of ge-
netic testing and providing protective safeguards for privacy and confidentiality. His-
tory indeed gives rise to legitimate fears surrounding the systematic use of inborn cri-
teria in social policy and forces us to be cautious.
While these are very serious concerns, they are again not unique to genetics. Sta-
tistics indicate differences in the incidence of cancers among local communities,'” the
lower incidence of high cholesterol levels among certain ethnic groups, and the fact
that HIV/AIDS is more prevalent among gays and intravenous drug users and specific
ethnic communities. Postal codes, for instance, can be a statistical indicator for having
a higher chance of being infected by HIV/AIDS or for bad housing and living condi-
tions which may affect one’s life expectancy. In general, rates of poverty in America
are much higher among certain ethnic groups. Poverty rates are one of the most im-
portant factors in explaining differences in life expectancy and overall health. In Can-
ada, some Inuit communities have very high rates of youth suicide and lower average
“‘ See e.g. J. Horgan, ‘Trends in Behavioral Genetics: Eugenics Revisited” Scientific American
268:6 (June 1993) 122 at 130. A more controversial analysis of the link between intelligence and eth-
nicity can be found in R.J. Hermstein & C. Murray, The Bell Curve: Intelligence and Class Structure
in American Life (New York: Free Press, 1994).
“. M.A. Rothstein, “Genetics, Insurance and the Ethics of Genetic Counseling’ (1993) 3 Mol.
Genet. Med. 159 at 170 [hereinafter “Genetic Counseling”].
“‘ M.A. Lapp6, “Justice and the Limitations of Genetic Knowledge” in T. Murphy & M.A. Lapp6,
eds., Justice and the Human Genome Project (Berkeley: University of California Press, 1994) 153 at
156.
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375
life expectancy than elsewhere in the country. Prohibiting genetic discrimination will
not protect people from discrimination based on these other factors.
The prohibition of third-party use of genetic information has also been defended
on the grounds that genetics are beyond individual control, and that people should not
be negatively affected by conditions for which they are not responsible.”‘ However,
many other health conditions are beyond individual control.” When is becoming dis-
eased really one’s own fault? What does it mean to “have control” over one’s health?'”
Is one morally justified in making a distinction between those who have contributed
to their disease and those who have not? And if so, how do we decide on what con-
stitutes a morally relevant contribution? The relationship between biological, social
and environmental determinants of health is extremely complex. The assignment of
responsibility for one’s own health is thus far from a simple matter. The debate over
the exclusion of battered women from insurance in the United States highlights the
problematic nature of insurance distinctions based on the question of who should be
held accountable for contributing to their own risk status.’2″ To hold people account-
able for “lifestyle-related” increased health risks without taking into consideration the
social, cultural and environmental context is, in many cases, to further discriminate
against those already vulnerable to the negative affects of discrimination. Such as-
signment of responsibility may itself be understood as an expression of existing
prejudice. The claim that HIV/AIDS is somehow a “self-inflicted” condition, for ex-
ample, resulting from one’s choice of sexual behaviour or injection drug use, is in
many ways a moralistic expression of bigotry and ignorance.
Genetics may create some interesting surprises for those who buy into the idea
that biological predisposition to disease is beyond individual control and should there-
fore not be the basis of discrimination, whereas risky behaviour is within one’s con-
trol and can therefore be socially sanctioned. Research into behavioural genetics now
suggests that genetic factors may account, at least partially, for many behavioural
… See e.g. “Genetic Counseling”, supra note 119 at 169; R.S. Brown, “The Impact of Advances in
Genetics on Insurance Policy” in R.S. Brown & K. Marshall, eds., Advances in Genetic Information:
A Guide for State Policy Makers, 2d ed. (Lexington, Ky.: The Council of State Governments, 1993)
43.
‘ N. Park & B. Dickens, “Legal and Ethical Issues in Genetic Prediction and Genetic Counselling
for Breast, Ovarian and Colon Cancer Susceptibility” in K.M. Taylor & D. De Petrillo, eds., Critical
Choices: Ethical, Legal and Sociobehavioural Implications of Heritable Breast, Ovarian and Colon
Cancer: Background Paper for the International Research and Policy Symposium (Toronto, 28-30
April 1995) 61 at 77-78; Murray, supra note 90 at 65-66.
‘2 For a discussion of the issues of risk behavior and access to health care, see R. Bayer, “Voluntary
Health Risks and Pubic Policy” (1981) 11:5 Hast. Cent. Rpt. 26; G. Dworkin, “Taking Risk, Assess-
ing Responsibility” (1981) 11:5 Hast. Cent. Rpt. 26; and, more recently, A. Darby, “The Individual,
Health Hazardous Lifestyles, Disease and Liability” (1999) 4 DePaul J. Health Care L. 787 at 798-
807; and E.M. Holmes, “Solving the InsurancelGenetic FairfUnfair Discrimination Dilemma in Light
of the Human Genome Project” (1997) 85 Kentucky W. 503.
‘2’ See D. Hellman, “Is Actuarially Fair Insurance Pricing Actually Fair? A Case Study in Insuring
Battered Women” (1997) 32 Harv. C.R.-C.L L. Rev. 355.
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traits and psychiatric disorders.'” If one accepts that genetic factors contribute to con-
ditions such as alcoholism’
and nicotine addiction, as some preliminary studies
claim, are individuals no longer responsible for the health consequences of these con-
ditions? This possibility is particularly ironic in light of the fact that smoking and al-
cohol consumption are two of the most common factors justifying higher insurance
premiums. They are frequently cited as examples of lifestyle choices which clearly
merit financial penalty or exclusion from health care. Some argue that, since people
clearly have control over smoking and alcohol consumption, they should not claim the
right to socially supported medical care for conditions caused by these habits.'” Al-
though the genetic associations I mentioned are controversial and raise many ques-
tions, they illustrate problems in presuming the existence of simple relationships be-
tween genetic and other determinants of health. Current studies in genetics pose im-
portant challenges to well-established beliefs regarding causal mechanisms of, and
control over, disease.
The last example also reveals difficulties that could be raised by prohibitions
against using any genetic factor in insurance underwriting. If research would demon-
strate a clear relationship between nicotine addiction, alcoholism, and genetic muta-
tions or polymorphisms, could insurers no longer increase premiums for those ad-
dicted to nicotine or alcohol? In life and disability insurance, mental health problems
are a serious concern for insurers, since they are a major cause of suicide and are gen-
erally associated with a high morbidity rate. What if research were to provide us with
a genetic test to detect increased risk for common mental health disorders such as bi-
polar depression or schizophrenia? Would those at risk for a mental health condition
be protected under the prohibitory approaches because it constitutes a “genetic condi-
tion”? Surely, this would profoundly alter insurance practices. But it would also seem
unfair that those whose condition has received a genetic imprimatur receive substan-
tially better protection against discrimination than those who suffer from a condition
which has not or not yet received the genetic label. To refer once more to the example
of alcoholism; those who are able to invoke a genetic predisposition for addiction
could use genetic discrimination rules as a shield against higher insurance premiums.
Drinkers without such a mutation would be held accountable for their behaviour and
would be at a disadvantage. Would such a disadvantage be fair?
” See National Institute of Mental Health, Report of the National Institute of Mental Health’s Ge-
netics Workgroup (Bethesda, Md.: National Institutes of Health, 1997).
“6 D. Carmelli, A.C. Heath & D. Robinette, “Genetic Analysis of Ddnldng Behavior in World War
II Veteran Twins” (1993) 10 Genet. Epidemiol. 201; for a critical analysis of the genetic studies on al-
coholism, see G.E. Vaillant The Natural History ofAlcoholism Revisited (Cambridge, Mass.: Harvard
University Press, 1995).
‘ See e.g. A.H. Moss & M. Siegler, “Should Alcoholics Compete Equally for Liver Transplanta-
tion?” (1991) 265 J. Am. Med. Assoc. 1295. In an eminently cynical discussion of the legal regulation
of genetic discrimination, one famous legal scholar refers to one of their arguments–that a reason to
deny coverage to alcoholics is that their behaviour renders them less deserving-as “an eminently
sensible position.’ See R.A. Epstein, “I’he Legal Regulation of Genetic Discrimination: Old Re-
sponses to New Technologies” (1994) 74 Boston U. L. Rev. 1 at5 and then n. 265.
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Xll. How Genetics Highlights Existing Problems
I have thus far argued that it is difficult to convincingly demarcate genetic infor-
mation from other health-related information. So, have ethical questions surrounding
genetics all been much ado about nothing? Surely not. There are sound reasons for
expressing concern. More systematic use of genetics deserves special attention be-
cause it could exacerbate existing problems. More than ever before, significant ethical
and social problems could be created by the use of medical data for commercial pur-
poses. Regulating the use of genetic data, as a separate category, could be impractical,
but it is important to attend to the problems that genetics highlights. Questions raised
in the context of genetics might convince people of the need for stricter regulation of
the use of medical information in general.
It could be argued that a combination of the following factors justifies current at-
tention to problems surrounding genetics: the volume of data likely to become avail-
able;’
the fact that so much information can be gathered from one sample, which it-
self can be kept for an indeterminate length of time; the relatively high predictive
value of many of the tests combined with remaining uncertainty and difficulty of in-
terpretation; the often fatal or incurable nature of the predicted disease; and the way
others (such as family members and ethnic groups) could be affected by genetic data
gathered from individuals. While other medical information may have an impact on
and relevance for family members, genetic data may sometimes be particularly sensi-
tive. For example, it may indicate a high risk of fatal or serious illness among family
members, thus raising questions with respect to moral responsibilities towards rela-
tives and the legal duty to warn of the person undergoing testing and of the physician
or researcher who is informed of the results. For some conditions, the development of
a genetic test is only possible with the collaboration of family members. Genetic
screening can reveal more than the test result aimed at. Cases of non-paternity are of-
ten revealed in the course of testing. This can be disruptive for people undergoing
testing, as well as for their families.”‘
Furthermore, as Murray maintains, the increasing number of genetic tests “broad-
ens the pool of possible factors that might be used to discriminate against an individ-
ual, and it likewise expands the pool of individuals who might become the subjects of
discrimination'””‘ In the context of insurance, this could have particular consequences.
Group risk classification could be replaced by individual genetic risk profiling. The
prospect of cheap testing makes such profiling a realistic possibility. A form of eco-
nomically imposed solidarity between those included in large risk groups might dis-
appear with the advent of individualized underwriting. More people could face seri-
ous financial consequences as a result of their individual risk status.
.Danish Council of Ethics, supra note 52 at 63.
‘” For a discussion of the ethical implications, see Wertz & Fletcher, supra note 110.
“0Murray, supra note 90 at 66.
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Solidarity and empathy arise more easily when people feel connected to the
problems and suffering of others and realize that they, too, could be affected by dis-
crimination. Genetics might stimulate society’s overall concern for the way some
people, already negatively affected by serious illness, are denied full participation in
society.
It is still too early to predict what could happen. According to some, so many pre-
dispositions and susceptibilities could be discovered that the number of people unaf-
fected by any genetic risk factor .may be reduced. This development, it is argued,
would necessarily reduce the incidence of genetic discrimination, since almost all
people would be susceptible to it.”‘ A cautious approach is still necessary, however.
The means of gathering genetic information, and the information that is gathered, will
renew debate on pre-existing social issues. It might well be, as Rothstein argues, that
“the status quo of virtually unregulated medical underwriting in life insurance will
become increasingly untenable as genetic technologies improve and proliferate.” ‘
In the meantime, the amazing pace at which genetic research develops and the
unavoidable uncertainty that exists in this time of discovery and testing of hypotheses
warrants special consideration. Ineliminable uncertainty and constant changes to our
understanding of disease resulting from genetic research should be taken into consid-
eration when discussing its potential use outside the research or medical context. First,
it takes time for genetic tests to establish a reasonable and fairly reliable degree of
predictive value. Meanwhile, private parties may be tempted to use this information,
and as such, they may misunderstand the findings and make erroneous health predic-
tions. Insurance companies may want to play it safe in refusing to offer coverage on
the basis of the uncertainty created by a new test. The recent case of J. v. London Life
Insurance.. highlights the possibility of such attitudes by insurers. As mentioned ear-
lier, this case involved a refusal by an insurance company to offer insurance to the
partner of an HIV/AIDS infected person, based on the potential risk of transmission
of the disease. The company based its refusal on the apparent lack of statistical evi-
dence with respect to the risk for infection. It thus preferred to play it safe, and to ex-
clude the person from coverage, rather than trying to accommodate that person.
Our understanding of medical conditions, including conditions for which there
was previously thought to be a clear genetic explanation, is often in flux, making it
problematic to count on an appropriate use of genetic test results by third parties.
Cystic fibrosis is a very interesting example in this context.” The identification in
1989 of the gene responsible for this condition, originally characterized as “early on-
set and fatal,” was one of the first great success stories of modem genetics. However,
Dreyfuss & Nelkin, supra note 5 at 334.
“Genetic Counselling”, supra note 119 at 170.
‘”[1999] B.C.H.R.T.D. No. 35, online: QL (BCHR) [hereinafterl. v. London Life].
“a “Genetic Antidiscrimination”, supra note 7. Beckwith & Alper rightly add a caveat when they
mention that only in the single-gene diseases is there a clear link between a gene and a particlar dis-
ease.
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further genetic research on cystic fibrosis has lead specialists to draw a more complex
picture of the disease. Many more different genetic mutations are now linked to cystic
fibrosis than were previously thought to be, resulting in different expressions of the
disease. More than 550 genetic mutations have been identified.'” The age of onset, the
severity of the expression, and the pace of development differ significantly depending
on the type of mutations involved.” Recent research involving infertile men, for ex-
ample, indicates that some men develop the condition only at a much later age and
may have only a very mild variation of the disease.'” They would previously have
been diagnosed as having, not cystic fibrosis, but rather other respiratory problems.
Whereas it was originally seen as the paradigm of a single-gene early onset fatal con-
dition, cystic fibrosis is now known to be a more complex disease, varying in expres-
sion. It is perhaps more appropriately considered a cluster of conditions rather than a
monolithic condition. Interestingly, some of the rarer mutations associated with late
onset mild cystic fibrosis are detectable only in the most sophisticated genetic labo-
ratories. This means that accuracy in diagnosis may depend in part upon where people
undergo testing. Often, milder forms of cystic fibrosis are detected only after couples
having reproductive problems visit an infertility clinic, clinicians may find that the in-
fertility is caused by the fact that the man has no vas deferens.”6 Absence of the vas
deferens is typical for males suffering from cystic fibrosis. Many of these infertile
men do not have any of the other typical clinical manifestations of the disease, are al-
ready past the common age for onset of the disease, but have two copies of one of the
rare cystic fibrosis mutations. This raises the following question: if experts are still
struggling with the meaning and predictive power of tests for one of the most classic
genetic conditions, and if diagnosis may depend on the sophistication of particular
laboratories, how can we rely on third parties with commercial interests to use this in-
formation in a reasonable way?
Genetic anti-discrimination laws, and the national and international declarations
calling for such protection, reflect a public perception that there is something unique
about genetics that warrants special attention. While I have argued that many of the
distinctions invoked are either not fundamental or else not tenable, the combination of
factors and the total volume of data likely becoming available justifies attention. Such
attention reflects an awareness of the fact that possible uses of genetic information in
the social context highlight existing problems. Genetics forces us to reconsider certain
basic problems and issues. One of these issues is the potential for increased individu-
alization within our society in private, contractual contexts.
” V. Mak & K.A. Jarvi, “The Genetics of Male Infertility” (1996) J. Urol. 1245 at 1249 and refer-
ence there.
“6 See e.g. M.-C. Romey et aL, “Complex Allele [-102T>A+S549R(T>G)] is Associated with
Milder Forms of Cystic Fibrosis than Allele S549R(T>G) Alone” (1999) 105 Hum. Genet. 145.
’37K. Jarvi et aL., ‘Heterogeneity of Reproductive Tract Abnormalities in Men with Absence of the
Vas Deferens: Role of Cystic Fibrosis Transmembrane Conductance Regulator Gene Mutations”
(1998) 70 Fertil. Steril. 724.
” The vas deferens is the duct by which semen is transmitted in the male reproductive system.
380
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The basic question which remains is whether the singling out of genetic condi-
tions the right response? Does this process of “singling-out” genetics, through legis-
lation and debate, not hide fundamental injustices in other domains. Ought we not
also ask ourselves what can be done with respect to poverty, housing problems, envi-
ronmental risks to health, and other factors that may affect health and life expectancy?
Narrow prohibitions against genetic testing ought not to distract us from paying heed
to other instances of injustice, which affect our collective health and well being, such
as inappropriate governmental support for health and welfare.
Xlll. Degrees of unfairness
So far, I have discussed insurance as a global concept and have analyzed why, on
the one hand, genetic exceptionalism is untenable, while, on the other hand, genetic
developments aggravate existing issues. So far, I have purposefully ignored the fun-
damental differences between various forms of insurance, as well as the gulfs between
health care in the United States, Canada, and Europe. The aim was to first give a more
general, global response to existing legal and regulatory initiatives focusing on genetic
data and to discuss the coherence of these initiatives. And yet, when we discuss the
fairness of these approaches, we need to look more closely at the context in which
these regulations play out, and at the role of insurance contracts in particular societies.
Both the American statutes, prohibiting the use of genetic data for health insur-
ance, and the European legislation, focusing on life insurance, suffer from inadequacy
and are potentially even inequitable for the same reason. However, there are salient
differences in degrees of injustice. In the United States, state legislation now often
protects carriers of genetic traits against exclusionary practices, while continuing to
allow insurers to exclude people from health insurance on the basis of other health
predictors. Without rational grounds, some people now obtain access to the social
good that is health insurance, while others in similar situations-for example, people
who are at a comparable risk for early death or disease because of a non-genetic con-
dition-are excluded from it or else are financially penalized. In a system where
health care is controlled by the underwriting practices of private insurance contracts,
the injustice is most basic, having to do with the inequality in access to health care.
Inequality in access to health care is clearly a more serious issue than, for example,
exclusion from a life insurance contract. The latter offers some financial stability to
surviving partners and family members but does not seem as essential. But this does
not take away from the fact that even in the latter case, statutes based on genetic ex-
ceptionalism treat people who are similarly situated differently.
The inequity is made worse by the prospect that, in the near future, those who are
most likely to be protected by genetic discrimination statutes are those who currently
have access to some form of health insurance. People who will seek information on
their genetic susceptibility will be those who have the financial means to undergo
testing or those who have a good insurance plan (and thus already benefit from better
health care). They will be more comfortable adding genetic screening to the array of
available diagnostic tests, while others already excluded from appropriate care will
also be deprived of this new medical tool. The commercialization of genetic services
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recommended by some will only widen differences in accessibility to genetic testing.
The selective protection of persons having such access may further accentuate the ex-
isting rift in access to health care in the United States.
Two examples may clarify the inequity in singling out genetic data for protection.
Under some of the selective genetics laws, a woman who carries the BRCA1 gene and
who is thereby at higher risk for developing breast cancer, cannot be charged a higher
premium. However, another woman who has undergone a mastectomy because of
breast cancer, who does not have one of the identified mutations and who has been
successfully treated, could be excluded or forced to pay higher premiums. If a predic-
tive genetic test for schizophrenia were to be developed (which is unlikely at this
time) a person identified as being at high risk for the disease could not be excluded
from life insurance. Other people who have been treated for depression may encoun-
ter difficulty in obtaining a similar contract if their condition were to not be linked to
specific genetic mutations.
That said, the proliferation of protective laws in the area of genetics should raise
awareness about more fundamental issues that need to be addressed. There are rea-
sons for the recent appearance in the United States of statutes focusing on genetic dis-
crimination. The perception that the increasingly widespread use of genetic testing is
more likely to affect all of us adds to the pressure to deal with more general issues of
access to health care and the need for financial security.
Considering the impact genetic developments are likely to have on underwriting
practices, it should not come as a surprise that more and more health care specialists
in the United States have called for the introduction of a universal health care system,
as exists in most European countries and in Canada.'”‘ In pointing out the flaws in
many genetic anti-discrimination laws, Beckwith and Alper posit that:
the optimal solution to this dilemma is a single-payer universal health care
system. In such a system, distinctions between genetic and nongenetic diseases
and tests become totally unnecessary. Because everyone would already be in-
sured, problems such as adverse selection in health insurance would not exist.”a
In an influential report on genetic testing, the Committee on Assessing Genetic Risks
also recommends that “risk-based health insurance should be eliminated””‘ and that
“‘ See eg. “Universal Access to Health Care” Note (1995) 108 Harv. L. Rev. 1323; M.A. Rothstein,
“Genetic Secrets: A Policy Framework” in Genetic Secrets, supra note 66 at 451 [hereinafter “A Pol-
icy Framework”]; Department of Health and Human Services, Health Insurance in the Age of Genet-
ics (1997), online: National Human Genome Research
Institute
“Distinguishing Genetic From Nongenetic”, supra note 98; for a succinct discussion and references
on the recent U.S. debate on universal health care, see R.A. Bomstein, “Genetic Discrimination, In-
surability and Legislation: A Closing of the Legal Loopholes” (1996) 4 JL. & Pol’y 551 at 576, in
particular n. 98.
“A Supra note 7 at 208.
4′ Andrews, supra note 117 at 281.
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Americans should have access to health care “without regard to the individual’s pres-
ent health status or condition, including genetic make-up.”‘2 The Committee thus rec-
ognized the need for a more global approach that encompasses health insurance in
general.
These developments are yet further confirmation of a widespread conviction that,
in the United States, access to health care is already a serious problem, particularly for
the un- or under-employed. For those who do have access to government-funded
medicare programs, the quality of care received is often significantly lower than that
provided to those who subscribe to private health care plans. Karen Rothenberg, re-
lying on information from a 1994 population survey of the Employee Benefit Re-
search Institute, declares: “[W]e live in a society where over forty million people have
no health insurance and limited or no access to our health care system””‘
While these views on issues of access are widely shared among many health care
analysts in the United States, they stand in sharp contrast to the lack of political sup-
port for serious health care reform. ‘There can be little dispute:’ Rothstein points out,
“… that the likelihood of a drastic change occurring soon in the United States is ex-
ceedingly small:”” In this context, it becomes more understandable why most states
opted to deal with this threat through prohibitory approaches focusing on genetics.
Acknowledgement of the fact that universal health care is not on the foreseeable hori-
zon creates a dilemma when considering the flaws of current genetic discrimination
laws. Rothstein, for example, seems to support genetic anti-discrimination laws inas-
much as they provide at least some protection. Beckwith and Alper argue, in the same
vein, that “laws controlling genetic discrimination represent an effort in the direction
of comprehensive reform of the health care system: ”
According to this line of argument, genetic discrimination laws are ‘better than
nothing’ and are a first step in the right direction. Others argue, on the other hand, that
protections against genetic discrimination take away incentives for further reform. It is
argued that in reassuring the public that genetic data will not negatively impact on
their access to health care, public support for significant change will disappear. Those
who are already deprived of health care will again be left in the cold. The self-
interested solidarity that they might have benefited from will be eliminated. For
Yesley,
“‘Ibid. [emphasis added].
“‘Supra note 63 at 103 ×.. Amy Darby estimates that there are thirty-seven million
Americans without health care and adds that neo-natal mortality in the U.S. compares to third world
countries (supra note 123 at 788). She also refers in a footnote to the 1994 State of the Union Ad-
dress, in which President Bill Clinton evokes that there are 58 million Americans without coverage
for some time each year (ibid.).
‘” “A Policy Framework”, supra note 139 at 456. Beckwith & Alper also admit that “in the present
political climate, the prospect of a universal health care system seems unlikely” (supra note 7 at 208).
“‘ Ibid. at 209.
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Removing the basis for this fear of insurance loss may seem a reasonable step,
but the possible cost of laws barring genetic discrimination in health insurance
should also be weighed. Although the piecemeal approach of barring genetic
discrimination may help a few people, it also removes a compelling argument
for the ultimate goal of universal health coverage, which would benefit far
more people.’ 6
In observing the health care system in the United States, and the attempts to re-
form it, it is easier to criticize from the outside the lack of coherence of the genetic
anti-discrimination and privacy statutes than to judge the comparative value of these
claims. On the one hand, fear of genetic discrimination could indeed create the neces-
sary conditions for general health care reform in the United States. Regulating genetic
discrimination could take away the support for such reform. On the other hand, it is
difficult to justify the suffering of those who could be affected by genetic discrimina-
tion on the basis of public good or future benefit for all. If one cannot achieve global
health care reform, is it so wrong to avoid at least one category of discrimination, as a
first step towards a more comprehensive form of access to health care?.
This is the approach taken by Alper and Beckwith:
[]n the short term, legislation covering genetic discrimination may uninten-
tionally serve to forestall more far-reaching reform of the health insurance sys-
tem. In view of this potential narrowing of focus, we believe that it is increas-
ingly important for advocates of legislation covering genetic discrimination and
privacy to work together with advocates of more far-reaching reforms. The
success of the campaign for the strictly genetic legislation should serve as a
first step towards comprehensive antidiscrimination and privacy legislation. “‘
XIV. Insurance Underwriting, Adverse Selection, and Fairness
Arguments in favour of prohibitions against genetic discrimination often invoke
the concept of fairness. I used this same concept to criticize that approach, arguing
that singling out genetic information for protection may add to already existing ineq-
uities. The crucial question is: to what extent is it unfair to make access to insurance
dependent on a health condition, be it a genetic one or not? To what extent, if any,
should people be able to obtain coverage irrespective of particular health predictors?
Insurers traditionally argue that there are two main reasons why they have to ob-
tain access to health information of insurance applicants: one economic and the other
moral. The economic reason is related to the phenomenon of adverse selection. Ad-
verse selection (or anti-selection) refers to the hypothesis that if insurance applicants
are allowed to hide health factors, insurers will soon be confronted with a dispropor-
tionate number of people at risk applying for extended coverage. Insurance applicants
who know that they are at risk and know that they can hide this have an incentive to
obtain insurance. As a result, insurers will have to pay out more claims. Extra costs
‘ Yesley, supra note 27 at 663.
“Distinguishing Genetic from Nongenetic”, supra note 98 at 148.
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will result in higher insurance premiums and people who are at low risk will gradually
lose interest in obtaining insurance. The proportion of high-risk individuals will thus
systematically increase. Insurance will enter a spiral of price increases and, according
to the insurance experts, in the end the industry will collapse.'” While the extent of
adverse selection is the subject of controversy, it is fair to say that some exchange of
information and some assessment of risk remain the basis for private insurance. It can
be expected that many people would take out insurance coverage if they knew that
they or their beneficiaries would be able to benefit from it in the near future.
The other argument invoked by insurers is the ethical concept of equity or fair-
ness; the same concept invoked by people who claim that use of genetic information
by insurers should be limited. According to insurers, they have to distinguish people
on the basis of individual risk for reasons of fairness to policyholders. According to
Pokorski, for example, “The fundamental goal of the underwriting process is equity:
policyholders with the same or similar expected risk of loss are charged the same'”
He goes on to say that “[a]n insurer may-and must—discriminate to achieve equity,
insofar as the discrimination remains fair”‘ This statement begs the question, since
the criterion for deciding whether equity is achieved is whether the means to achieve
it are fair. What Pokorski argues is that, in insurance terms, an insurance scheme is
equitable if it respects actuarial rules. It presupposes that the use of actuarial rules it-
self is neutral and not questionable from the standpoint of equity.
Equity in this sense is rooted in the notion of contractual liberty. People who sign
an insurance contract know what they are getting into, and understand that the rule of
the game is underwriting, which involves assessment of individual risk. As Norman
Daniels indicates, however, equity in this context is more accurately described as ac-
tuarial equity. It is fairness according to existing insurance practices, based on “actu-
arially accurate determination of … risk.””
This is to say nothing of the fairness of the premise that access to insurance
should always be based on presumptions of contractual liberty. This is a much more
fundamental question, and it is one that goes to the heart of the debate over the limits
of contractual liberty and issues of distributive justice in health care and social secu-
rity. The equity invoked by insurers is valid for those who accept the premise on
“‘ For a more detailed discussion of adverse selection and references, see Lemmens & Bahamin,
supra note 18 at 171-75 and references there.
“‘ R.J. Pokorski, “Use of Genetic Information by Private Insurers” in Murphy & Lapp6, supra note
120, 91 at 92 [hereinafter “Use of Genetic Information”; see also RJ. Pokorski, “Genetic Informa-
tion and Life Insurance” (1995) 376 Nature 13; K.A. Clifford & R.P. luculano, “AIDS and Insurance:
The Rationale for AIDS-related Testing” (1987) 100 Harv. L. Rev. 1806. But see M.C. Anderson,
“Genetic Testing in Insurance Underwriting: A Blessing or a Curse? An Examination of the Tension
Between Economics and Equity in Using Genetic Testing in Risk Classification” (1992) 25 Creighton
L. Rev. 1499.
“Use of Genetic Information”, ibU at 93.
‘ N. Daniels, ‘Insurability and the HIV Epidemic: Ethical Issues in Underwriting” (1990) 68 Mil-
bank Q. 497 at 500.
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which the insurance game is based. The more important issue as to how insurance fits
within our vision of a just society calls into question the premise upon which claims
of fairness are made.
It is important to note that a discussion of the role of insurance in society cannot
and should not be avoided when discussing the fairness of genetic discrimination in
insurance. Although the insurance laws providing exclusive protection against genetic
discrimination seem inappropriate in many ways, they make clear the need for a more
global approach towards the issues of access to health care and financial security.
Following Michael Walzer, I will argue that the way insurance as a good ought to
be distributed depends very much on its meaning. And since the meaning of goods
can only be determined by examining patterns of exchange of goods in particular so-
cietal and cultural contexts, we can only judge the equity of a particular insurance
scheme by looking at its role in the context of a particular society. On the basis of this
argument, one can understand and explain the temporary focus of American statutes
on genetic discrimination, while at the same time making a case against the develop-
ment of similar laws in Canada. The latter, as I will point out, is conditional on a
strengthening of the public health care system and the development of appropriate
democratic structures to determine what constitutes reasonable underwriting practices
in private insurance.
XV. Health Care and Insurance in a Just Society
In Spheres of Justice, Walzer argues forcefully that a just society is one in which
different goods are distributed according to autonomous distributive principles, de-
pending on their particular role.”‘ Equity, Walzer claims, is not attained by giving
people equal access to all goods, which is an idealistic and untenable ideal, simply
because people value goods differently. Human nature being what it is, many goods
would be distributed unequally shortly after they would have been distributed in an
egalitarian way. They may be traded, exchanged, divided, abandoned, or become
subject to speculation. Equal distribution of goods would be a continuous and never-
ending process. A just society, according to Walzer, is therefore not a society in which
everyone possesses the same. It is, rather, a society in which relationships of domi-
nance are avoided. Such dominance occurs when the possession of one particular type
of good gives the owners privileged access to other types of goods. An example of
such dominance is when money gives its possessors power over all other goods that
are exchanged in society, including political office and representation, medical care,
and education. A just society, in other words, does not allow the concentration of
power over different types of goods. This explains the public outrage in our demo-
cratic societies, for example, when the public perceives that someone has privileged
access to ministerial cabinets because of her money or when people protest against the
. M. Walzer, Spheres of Justice: A Defense of Pluralism and Equality (New York- Basic Books,
1983).
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granting of an honorary degree for what they perceive to be fundraising purposes.
Money ought not to determine political attention, and honorary titles ought to be de-
served.
Walzer’s arguments are based on a theory of goods in which goods are under-
stood as essentially social in nature. Goods, as such, derive their particular meaning
from human interaction and sharing. Human interaction itself is determined by, and
closely connected to, the exchange of goods. To a great extent, people define them-
selves through goods. They identify themselves, and are identified by others, through
interchange with others-much of which involves the exchange of goods. If the
meaning of goods differs fundamentally, Walzer claims, then their distribution must
be distinct, and dependent on their meaning. He outlines three different criteria ac-
cording to which goods can be distributed: free exchange, desert, and need. What
counts as an equitable distributive criterion in one sphere is not necessarily appropri-
ate as a criterion in another. Justice is attained when the distinctions between different
spheres are respected and when the appropriate distributive criterion is applied within
each particular sphere.
Walzer discusses several examples of how goods are distributed within different
spheres of justice, regulated by appropriate procedures and according to distinct crite-
ria. Two of the spheres he discusses are particularly interesting in the context of insur-
ance: the sphere of Money and Commodities and the sphere of Security and Welfare.
The goods in the sphere of Money and Commodities, Walzer argues, ought to be
distributed according to the distributive criteria of the marketplace. People spend
money differently, depending on personal preferences, on character traits (for exam-
ple, whether they are risk takers or conservatives) and on their particular vision of
what they need to have a good life. Walzer recognizes the importance of respecting
free exchange as an appropriate criterion within this sphere. Money and commodities
ought not necessarily be available to all in the same way. Remember that people have
a tendency to spend things differently and value these goods in a different way. There
are, however, limits to the use of the principle of free exchange, even when dealing
with goods that can be qualified as falling in the category of Money and Commodi-
ties. Access to some of the goods in this sphere is essential, since “[c]ommodities are
symbols of belonging; standing and identity are distributed through the market, sold
for cash on the line ..'”” Since participation in the exchange of goods is so essential,
there have to be corrective forces (i.e. redistribution within the market) in order to
avoid over-concentration of money and commodities.
The market itself is based on contractual liberty, on an exchange between ap-
proximate equals. Such liberty makes sense only if people are in a position of choice.
Walzer therefore strongly argues that desperate exchanges should be banned. Mini-
mum wage laws and health and safety regulations are examples of corrective forces.
They make sure that people who are in a vulnerable position are not forced to accept
.Ibid. at 106.
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any contractual condition merely to have access to specific goods of the market. Re-
distribution takes place through limitations of market power, through the tax system,
and through the regulation of property rights.
It should be clear how this could be relevant in the context of, for example, life in-
surance contracts that aim at offering some financial security and stability. Walzer
recognizes that some degree of access to money and commodities is crucial for full
membership in society. This form of minimal access to goods is normally obtained
through means other than insurance. However, there may be circumstances in which
insurance contracts could play a role in safeguarding some elementary form of finan-
cial independence or they could be a pre-condition for access to other goods. Fur-
thermore, when concluding contracts people should not be powerless, even if the aim
is to obtain goods in the category of Money and Commodities. They should have
some flexibility in either accepting or rejecting these contracts. The state, in other
words, might be justified in intervening in such a way as to limit contractual liberty.
Another distinct sphere of justice that Walzer discusses in much detail is the
Sphere of Security and Welfare. If anything at all is fundamental within a community,
it must be the existence of some form of mutual provision. Mutual provision is the re-
sult of living in a community, but it is also the precondition for constituting a commu-
nity. Goods that belong in this sphere are goods to which all in a given society should
have access. In this sphere, goods ought to be distributed according to the criterion of
need. These mutually shared goods have a double function, according to Walzer. Peo-
ple receive them because society perceives them as essential, but they are also given
as recognition of membership. The goods of this sphere carry much moral weight and
express core values of a community. Communal agreement of what ought to be dis-
tributed to all is an expression of the kind of social contract through which members
of a community share a moral bond.”‘ The precise content of the goods of this sphere
differs according to time and place, but there are always some goods the value of
which seems to be universal.
In discussing issues related to insurance, other auhors explicitly note that choices
regarding insurance systems impact on the way a community defines itself. Deborah
Hellman, writing about insurance discrimination against battered women, recognizes
that “[a] way of understanding the disagreement over the justifiability of insurance
rating is as a discussion about what kind of a community we want to be.”” Referring
to Deborah Stone, she argues that “the debate about whether the actuarial fairness
principle ought to govern health insurance pricing is a debate about whether ours is a
community that is committed to the provision of aid to those who are sick or dis-
abled:”‘ This recognition of access to health care as a defining feature of society is
very much in line with Walzer’s theory. He highlights the importance of health care in
‘ Ibd at 82.
’55 Hellman, supra note 124.
‘ Ibid.
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our contemporary society in the following way: medical care has become a socially
recognized need so that
deprivation [of medical care] is a double loss–to one’s health and to one’s so-
cial standing. Doctors and hospitals have become such massively important
features of contemporary life that to be cut off from the help they provide is not
only dangerous but also degrading!”
In other words, people’s dignity is at stake when they do not have access to decent
health care. The degree of current public debate over health care is unprecedented.
Health and physical well being are the foci of an inordinate part of public discourse.
Issues related to health care are the subject of major talk shows, and are at the centre
of an extraordinary number of television series in the United States.”‘ Difficult med-
ico-ethical dilemmas or spectacular performances in health care make heroes of phy-
sicians, researchers, bioethicists, and health care workers. More fundamentally, health
care is a recurrent theme in the political arena.
XVI. Fairness in Access to Health Care in the United States
Since Walzer recognizes that the content of Security and Welfare is subject to
communal understanding and decision making, he therefore has to accept that socie-
ties may offer differing levels of medical care. What constitutes a social good is de-
termined on a communal level. Different communities nake different choices re-
flecting different priorities. Walzer acknowledges that the absence of a universal
health care system in the United States could mean that the community has set a low
standard of what belongs to this sphere. This could be a political decision and it
would, according to Walzer’s theory, be difficult to argue against such a social per-
ception of the common good. However, certain facts pose a challenge to this inter-
pretation. As Walzer observes, “So long as communal funds are spent, as they cur-
rently are, to finance research, build hospitals, and pay the fees of doctors in private
practice, the services that these expenditures underwrite must be equally available to
all citizens.”” In other words, although large portions of communal provisions are
spent on the development of health care, health care resources are distributed une-
qually, and many have no access to appropriate care. Medical care is clearly recog-
nized as a part of the sphere of Security and Welfare, and as such, is an essential good
in society, but its distribution is unequal. Distribution takes place very much according
to the rules of the marketplace. In other words, possession of money allows people to
buy access to goods that should be distributed according to a different distributive
criterion. Money allows people to transgress the boundaries and buy access to goods
that should be distributed according to need.
“‘Walzer, supra note 152 at 89.
“‘For an entertaining analysis of this phenomenon, see C. Elliott & J. Kahn, “Does on the Box: Or,
How We Learned to Stop Worrying and Love The Tube” (1994) 24:6 Hast. Cent. Rpt. 22.
” 9 Supra note 152 at 90.
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389
As pointed out, Walzer’s theory of justice is relevant for our discussion of the role
of insurance and the equity of regulations focusing on genetics. State and federal stat-
utes in the United States dealing with genetic discrimination and privacy are precisely
a confirmation of Walzer’s argument that medical care is a primary social good, even
if health insurance is submitted to private market mechanisms, and even if many have
no access to decent health care. Writing about American statutes, Hall notes:
Our instincts about the social versus private market dimensions of insurance are
much different for life versus health insurance because health care is much
more of a social necessity than are burial expenses or cash support for depend-
ants. Accordingly, most statutes only restrict use of genetic information in
health insurance.”O
The tendency to ban genetic testing for insurance purposes, despite its flaws, illus-
trates at least a couple of fundamental points: access to health care on the basis of
need remains a precious good, and there is an attempt to preserve some form of it in
the United States.
If health care is so important in society that it should be offered on the basis of the
criterion of need, serious reforms are needed in the United States to offer basic access,
regardless of one’s health predictors. Health care should in fact be provided in pro-
portion to need. Many of the people who are in greatest need risk falling between the
cracks if they can be excluded from insurance coverage on the basis of genetic or
other risks to health. As discussed earlier, however, by guaranteeing access to health
care only to those who could become excluded because of a genetic condition, others
whose health is at risk for different reasons are treated unfairly. The distributive crite-
rion for health care is overall need, not exclusively need that is related to being at ge-
netic risk. Further, narrow protections against genetic discrimination could also un-
fairly benefit those who are already in a more favourable position with respect to ac-
cess to health care. Genetic tests are not freely available, even though some popula-
tions may have access to genetic screening as part of research projects. These tests
will likely be available on a commercial basis for those who can afford them or per-
haps for those who already have insurance and are reimbursed for testing. As I men-
tioned earlier, those who currently do not have access to health care are unlikely to go
for genetic testing. Their position will not improve as a result of genetic exceptional-
ism. On the contrary, these laws may very well reinforce existing injustices in the
health care system.
XVII. Fairness and Genetic Discrimination Statutes in Europe
While the desire to preserve some access to private health insurance may explain
the wave of genetics legislation in the United States, the same cannot be true for
Europe. Most European countries have some form of universal access to health care.
Countries that have established the most stringent legislation do have universal health
Supra note 79 at 18.
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[
care. Many of these countries also have stringent privacy legislation. According to
Paul Schwartz, the latter clearly shows that confidentiality and privacy of medical in-
formation is an important value in and of itself, irrespective of the issue of access to
health care and genetic discrimination. “‘ While this rings true, concern for privacy is
clearly not the only reason for these legislative initiatives, since some laws explicitly
prohibit the use of genetics by insurers. The existence of a universal health care sys-
tem does not seem to be sufficient to dissolve people’s concern about genetic dis-
crimination. Something other than the desire to keep genetic information under per-
sonal control and within the sphere of privacy is at stake.
The fact that the first laws dealing with the prohibition to discriminate on the ba-
sis of genetic information were proposed or adopted in countries with a universal
health care system may simply confirm the existence of a different moral bond. It may
reflect a different interpretation of what members need to become full participants in
society. The support in many European countries for limitations on insurers’ under-
writing power in the context of life and additional health insurance is an indication
that these insurance contracts are considered to be more than mere commodities or, at
least, that they should be traded on the market with serious restrictions.
Societies that embrace universal health care and other social policies are also
tempted to impose solidarity in other domains. Walzer’s observation that “[t]he closer
and more inclusive [the social contract] is, the wider the recognition of needs, the
greater the number of social goods that are drawn into the sphere of security and wel-
fare “‘
is very poignant in this regard. In general, there are more redistributive meas-
ures in Europe than in the United States. The role of labour unions in many European
countries, the provision of social housing, public education (including access to uni-
versities), the redistribution of wealth through proportionally higher taxation, and so
on, are all indicators of a more inclusive sphere of Security and Welfare. The tendency
to limit insurers’ power to discriminate in life and additional health insurance may
suggest that access to some form of financial security for family members and rela-
tives, and to additional health care coverage are highly-valued social goods.
As mentioned, an interesting attempt was made to combine the rules of the insur-
ance market with the provision of some basic access to life insurance in the Nether-
lands. There, the insurance industry provided on its own a guaranteed access to life
insurance for contracts under about $140,000. In a way, this provision can be seen as
a recognition of the importance of some minimal form of financial security provided
by the market.
It is important to point out that in some countries, life insurance contracts also
play a particular role insofar as they are a prerequisite for other important contracts. In
the United Kingdom, for example, mortgages to buy a house have to be supported by
life insurance. Under such a system, people need insurance to obtain what is for many
!61 Schwartz, supra note 66 at 397.
“2 Supra note 152 at 83.
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391
a fundamental good. This is the reason why the British insurers agreed to provide ba-
sic life insurance up to 100,000 without asking access to genetic testing.'” Such
practices that aim at safeguarding some form of universal access to these goods are
just another expression of the social value placed on these goods.
These examples highlight Wazer’s analysis of the crucial role goods may play
within society, even when they are distributed according to the rules of the market. In-
surance coverage may be seen as important for one’s full membership in society, even
when universal health care and social security provide health care and minimal finan-
cial security. Even if the insurance contract itself is not seen as crucial, it may still be a
necessary condition for obtaining access to a more important, central good. Owner-
ship of a house clearly is an important good in many states in which socially sup-
ported housing projects work towards the creation of access to home ownership.
Ownership is part of the creation of one’s private space. At least insofar as insurance
is a pre-condition for ownership, it should be made available as much as possible
across society, through rules which limit the insurance market.
What lessons can be learned from the genetic discrimination debate in the United
States and Europe? Have we reached the point where we can comfortably conclude
that specific measures ought to be taken in Canada to curb the potential negative im-
pact of the use of genetic information by third parties? If so, what are these measures?
It is to these issues that I turn next.
XVIII. Lessons for the Canadian Health Care and Insurance
Systems
I have argued that the debate over the need for genetic discrimination laws in the
United States highlights the problematic and contradictory nature of the American
health care system. Health care is clearly recognized as a social good, but distribution
is provided on the basis of market criteria. Genetic discrimination laws in the United
States are an imperfect response to a pre-existing crisis in health care distribution-a
crisis that could be aggravated with the advent of genetic testing. Genetic testing
would only increase social stratification and exclude an even larger section of the
community from needed health care services.
What can we learn from this for the Canadian context? First, the strong arguments
made by American health care experts for health care reform, and the need for a sys-
tem of universal health care should serve as a wake up call for those in Canada who
call for privatization of important components of the health care system. One should
consider very carefully whether privatization of specific health care services, includ-
ing genetic services, would not bring with it a pressure for individualized risk assess-
ment in the context of insurance. This could undermine equitable access to health
care, not only of those who are genetically at risk, but also those at risk for other
” Supra note 59 at 5.
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health factors. It is far from clear that governmental intervention, limiting the rules of
the insurance market in order to improve access to private insurance goods, can curb
the tendency of the market to exclude those who need health care the most. Again, the
saga of the genetic discrimination statutes in the United States illustrates how difficult
it is to develop an equitable system when underwriting and premium setting on the
basis of risk status is used in the distribution of a good that belongs within the sphere
of security and welfare.
Second, it should be understood that the implementation of genetic discrimination
legislation in the United States is a particular response within a particular community,
which has opted for a particular distributive system of health care. The legislation has
specific, American-based rationale. At this point, the claim cannot be made for a
similar urgent need for protective legislation in Canada, since at least basic health care
is universally distributed according to the criterion of need. Could that change? Or
alternatively, does that mean that we can sit back and contemplate, without worry, the
vices of the health care worlds “out there”?
We should not lend such self-congratulatory praise to Canadian health care as part
of our distinct national identity without first examining threats to the system and its
increasing deficiencies. The recent debate surrounding the proposals by Alberta pre-
mier Ralph Klein to increase the role of privately funded health care services has
highlighted the pressure on Canada’s health care system and the precariousness of the
perceived social consensus around the system.'” As Colleen Flood indicates, the sig-
nificant drop in the cash contributions by the federal government, even though par-
tially compensated by the transfer of tax points to the provinces, has undermined the
ability of the federal government to enforce the standards of the Canada Health Act.’
Unless the federal government satisfies some of the financial requests of the provin-
cial governments, some provinces may be tempted to solve budgetary constraints in
health care by partial privatization of services currently covered by public funding. In
other words, there is increasing pressure to allow private actors into the health care
arena, not only to offer services in areas where the public sector has traditionally not
been very active, but also to offer faster or more sophisticated care for those who are
willing to pay for it.
The importance of additional health and disability insurance is increasing steadily.
People with private health insurance plans already have access to many health care
services (including dental care, prescription drugs, home care, and vision care) that
others may not be able to afford. ” It must be said that most people subscribe to addi-
‘” For a defence of Premier Klein’s proposals, see R. Klein, “Dr. Klein’s Prescription” The Globe
and Mail (3 December 1999). See also L Travers, ‘Medicare Needs Cash Transfusion” The Toronto
Star (2 December 1999).
in J. Downie & T.
Caulfield, eds., Canadian Health Lav and Policy (Toronto: Butterworths, 1999) 5, in particular at 24-
27.
” C. Flood, “The Structure and Dynamics of Canada’s Health Care Systen’
‘” See ibid. at 9 for a discussion of health care services that are not publicly funded in Canada.
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tional health and disability insurance plans through their place of employment. For
these group insurance plans, there currently is no detailed underwriting process and
people are not excluded from insurance coverage on the basis of individual risk as-
sessment. However, those without employment do not have access to these plans.
Moreover, it is not inconceivable that even access to group insurance plans may
change as a result of increasing health care costs and increasing possibilities for indi-
vidualized assessment (through, for instance, genetic testing). Insurance companies
and employers negotiate and come to an agreement on the different types of health
care expenditures that will be covered by the insurer. Could companies increase their
bargaining power to obtain lower insurance premiums if they offered insurers a low-
risk employee population? Employers would have a strong interest in excluding peo-
ple who are at a high genetic risk for developing costly diseases. Further develop-
ments in genetic testing may affect insurability for additional health and disability in-
surance, thus impacting on access to health care for people at genetic risk. Again, it is
important to stress here that the increasing importance of additional health and dis-
ability insurance would affect not only people at genetic risk. There are already seri-
ous problems of equitable access to health care. People who are unemployed, for ex-
ample, often do not have the same level of health care as do those who are employed.
If additional private insurance increases in importance, this inequity will only become
more serious.
In the context of genetics, differences in access to drugi may also proportionally
increase in importance. Genetic research may lead to the development of more indi-
vidually tailored drugs and preventive therapies.” Pharmacogenetics might thus exac-
erbate differences in access to health care between those with and those without a de-
cent drug insurance plan. This should be taken into consideration when thinking about
the future of universal health care and the need for comprehensive pharmacare plans.
The serious challenges to the American health care system, and the significant efforts
needed to adapt the American system in light of the development of genetic testing,
should make it clear that simply privatizing health care in Canada is not an equitable
solution to the problems in Canadian health care.
European attempts to introduce genetic discrimination laws add an interesting al-
ternative perspective. Although local differences remain, it is fair to say that access to
health care in Europe and Canada are similar. Still, we have seen that genetic dis-
crimination laws have been developed in Europe. Although these laws suffer from
problems similar to the American statutes, they are worthy of our attention insofar as
they highlight the fact that even life and additional health insurance may be very im-
portant goods. While such insurance may not be as important as basic health care,
particular societies may value it in such a way as to command some form of equitable
distribution.
267 See supra at 123.
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There are two ways in which to explain this special attention to insurance issues
in light of WaIzer’s theory of justice. First, it might fit Walzer’s analysis of the distri-
bution of goods within the sphere of Money and Commodities. Walzer argues that
when goods are distributed within the sphere of Money and Commodities according
to the criterion of free exchange, there may still be a need for limits to contractual
freedom and to the rules of the liberal market. Walzer mentions that governments can
intervene to establish a better equilibrium between contractual parties. Other public
policy concerns may also require governments to intervene in insurance markets. We
generally already accept that insurers may not be allowed to make distinctions ac-
cording to certain criteria that make sense in actuarial terms but not in terms of justice,
because of the particular meaning attached to these distinctions. It would be hard to
morally justify, for example, charging women who are victims of abusive relation-
ships a higher life insurance premium.'” The same is true for distinctions based on
ethnic background. An insurance company would not likely feel comfortable de-
fending a policy of charging higher life-insurance premiums on the basis of ethnicity,
even if it were to make sense from an actuarial perspective.”‘ Historical and contem-
porary social considerations, such as the tales of racial and sexual discrimination,
have moral significance.
These examples illustrate the fact that, while certain practices may be defended in
economic terms, they may be prohibited on ethical grounds. A legal system that
would endorse these practices would reinforce social stignia and contribute to injus-
tice. This raises the question: do the European initiatives reflect a view of genetics as
having particular characteristics, which result in it falling under the rubric of morally
objectionable discrimination? Are these statutes and the European Convention on
Human Rights and Biomedicine”m a reflection of the fact that people affected by a ge-
netic predisposition merit particular protection by virtue of being “genetically dis-
abled”?
I have discussed the ways in which genetic data is not fundamentally different
from other types of health information, although a combination of factors make it
very reasonable to pay attention to its social impact. I also indicated that it may not be
feasible to single out genetics as a separate category, insofar as genetic exceptionalism
might only add to existing injustices.
The European provisions remain interesting, however, as a reminder of important
issues surrounding the potential social implications of genetic testing, even within so-
cieties that have universal health care systems. This brings us to consider a second
way in which one could situate the special protective legislation on insurance and ge-
netics within the framework of Walzer’s theory. The regulatory initiatives surveyed
may be based on a confusion of the place of insurance within contemporary European
society, a confusion that speaks further to the need for improving access to health care
z6 See the discussion in Hellman, supra note 124.
t6 See D. Stone, “AIDS and the Moral Economy of Insurance” (1990) American Prospect 62.
170 Convention, supra note 40.
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altogether. The regulatory initiatives may indicate a shift in the role of private insur-
ance in countries with a universal health care system. Concerns raised by this are
highlighted by developments in genetic testing. The idea seems to be that insurance
may be a social good-a good to which all people should have access irrespective of
their particular genetic predisposition. The insurance statutes of Austria, Belgium, and
Norway clearly reflect this idea, and so does the Convention on Human Rights and
Biomedicine. The Convention is grounded in the need to protect human dignity and
the valuing of the interests and welfare of individuals over the interests of society,’
but it also makes explicit reference to the notion of “equitable access to health care”.
The Convention reinforces the right of equitable access to health care that is expressed
in other conventions, such as the European Social Charter.” Article 3 obliges states
to “take appropriate measures with a view to providing, within their jurisdiction, eq-
uitable access to health care of appropriate quality”” The Explanatory Report states
that the aim of this provision is “to ensure equitable access to health care in accor-
dance with the person’s medical needs” and that “equitable access implies effectively
obtaining a satisfactory degree of care'”” The articles dealing with the prohibition
against discrimination on the basis of genetics also reflect concern for the negative ef-
fects of genetic technology, which should aim at providing better medical care to in-
‘ Articles I & 2.
“n Council of Europe, European Social Charter, E.T.S. No. 35 (1961) [hereinafter Social Charter].
Part I of the Social Charter contains among others the principles that the signatories
accept as the aim of their policy, to be pursued by all appropriate means, both national
and international in character, the attainment of conditions in which the following
rights and principles may be effectively realised:
I1. Everyone has the right to benefit from any measures enabling him to enjoy the
highest possible standard of health attainable.
13. Anyone without adequate resources has the right to social and medical assistance.
14. Everyone has the right to benefit from social welfare services.
Principle 16 may also be of interest in the context of genetics, to the extent that genetic discrimination
may impact on families affected by a genetic disorder. It states that “[tihe family as a fundamental
unit of society has the right to appropriate social, legal and economic protection to ensure its full de-
velopment.”
Article 11 of the Social Charter, entitled ‘”he right to protection of health”, states:
With a view to ensuring the effective exercise of the right to protection of health, the
Contracting Parties undertake, either directly or in co-operation with public or private
organisations, to take appropriate measures designed inter alia:
1. to remove as far as possible the causes of ill-health;
2. to provide advisory and educational facilities for the promotion of health and the en-
couragement of individual responsibility in matters of health;
3. to prevent as far as possible epidemic, endemic and other diseases.
173 bid.
” Explanatory Report, supra note 43 at paras. 24, 25 ×..
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dividuals. One could argue that the articles dealing with genetic discrimination in the
Convention also touch upon the importance of access to health care.
At the risk of making some sweeping generalizations, one can say that European
countries do have some form of universal health care and do have generous public
support for access to health care, compared to the United States. In other words, in
Europe, there would not seem to be the same obvious need for protective legislation.
People affected by a genetic predisposition in Europe do not risk being immediately
excluded from access to health care. And yet, many European countries have still in-
troduced stringent legislation (or are under an obligation to do so by signing the Con-
vention), limiting the right to use genetics in the context of private life, disability, and
additional health insurance plans. This confirms earlier discussions with respect to the
lessons to be learned from the American context. Pressures on universal health care
systems may increase the need for additional private insurance. Additional health in-
surance has become more essential than ever and it is becoming a crucial pre-requisite
for obtaining quality care. Dental care is generally not covered by the health care
system. Private drug insurance plans are also important in ensuring access to medica-
tion. In short, private contracts are becoming increasingly important for access to ap-
propriate care, and private partners are increasingly involved in the provision of ac-
cess to social goods.
The European Convention and the national statutes dealing with genetics and in-
surance may be indication of this development and an expression of an increasing
need for public regulation of private insurance. As Thompson notes in discussing de-
velopments in the United Kingdom, where private actors are becoming increasingly
involved in the provision of care:”
[l]n light of the political shift in favour of increased partnership between the
public and private sectors for the provision of health care in the UK, it would
seem prudent to act now to establish an environment that is conducive to pri-
vate-enterprise participation, but at the same time firmly reiterates the social
rights which are central to public policy.” 6
It remains to be seen whether the dynamics of the market can be reconciled with the
inherently social character of the need for health care. Can private insurers still flour-
ish if requested to play a part in a system aimed at distributing social goods on the ba-
sis of the criterion of need? To what extent can limitations be placed on the rules of
the market? Or rather, what can be expected in terms of collaboration between public
“‘ For a thorough analysis of the health care reforms in the United Kingdom, United States and
Canada, see CJ. ruohy, Accidental Logics: The Dynamics of Change in the Health Care Arena in the
United States, Britain, and Canada (New York: Oxford University Press, 1999); see also C.M. Flood,
International Health Care Reform: A Legal, Economic and Political Analysis (London: Routledge,
1999), comparing health care reforms in the U.S., the Netherlands, New Zealand, and the United
Kingdom, and discussing the implications for the Canadian system.
“7 B. Thompson, “Viewpoint: Time for Reassessment of Use of All Medical Information by UK In-
surers” (1998) 352 Lancet 1216 at 1217.
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and private sectors? These are the challenges with which health policy analysts, con-
sumer groups, insurance companies, health economists and governments will have to
struggle.
The preceding arguments concentrated on the role that private, additional health
insurance schemes could play in providing access to health care. Similar arguments
can be made about the potential shift in the role of life and disability insurance in our
society. Reductions in welfare budgets and an increasingly unequal distribution of
wealth may make it more important to have some form of private insurance, providing
some form of financial security for less fortunate times. Offering financial security to
dependants through life insurance or other private investment plans may become in-
creasingly important. In countries with an imperfect system of universal health care
and social security, one could argue that access to additional health insurance and life
insurance becomes more of a necessity.'”
Prohibitions against genetic discrimination reflect the social importance of this
type of safeguard against uncertainty. Some of the initiatives discussed earlier express
a view of this type of insurance as a social, or at least quasi-social, good. Minimum
insurance contracts, as offered by insurance industries in the Netherlands and United
Kingdom, have been supported as an inventive way of providing access to basic
goods.” The American Task Force on Genetic Information and Insurance, while fo-
cusing on health insurance issues, also points out that it is worth discussing whether
there should be universal access to basic insurance for all. The report concludes a
short discussion of life and disability-income insurance with the question: “What level
of coverage would meet the test of social justice?”‘”
As I mentioned, it is easier to qualify for the minimal insurance offered in the
United Kingdom as a social good, because of the important role of this type of insur-
ance for access to property ownership. Since life insurance in the United Kingdom is
a pre-condition for obtaining a mortgage, being excluded from life insurance would
mean exclusion from access to home ownership. If basic life insurance per se is not a
social good, access to ownership may very well be.
Attempts to combine elements of universal access with market-oriented distribu-
tion systems are not necessarily in conflict with Walzer’s theory of justice. The crux
of the matter is whether there is some basic distribution of goods belonging to the
sphere of Security and Welfare according to the criterion of need. This does not mean
that such goods can never enter the market. If basic segments are provided to those in
need, Walzer argues, the market can play a role in distributing according to the crite-
rion of free exchange. “Needed goods are not commodities,’ Walzer argues, “[They
can be bought and sold only insofar as they are available above and beyond whatever
n See e.g. the discussion in Sandberg, supra note 103.
‘~’ Ibid.
‘ NIH-DOE Working Group, supra note 68 at 29.
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level of provision is fixed by democratic decision making .. “” This seems to suggest,
though, that at least some form of welfare and health care should be offered within the
public sphere, outside of the commercial context. But would need-based limitations
on the free exchange of the market be irreconcilable with Walzer’s theory? If the
community decides that some form of basic insurance-be it health insurance in the
United States or life, disability and additional health insurance in Europe or Canada-
is essential, it should be provided on the basis of need. It might not matter whether
this is established by limiting the rules of the private market or by providing it through
public distribution. Economic rules may impose limits on what the market could do.
What one has to keep in mind is that needed goods should be distributed through the
mechanisms of the market only if this does not unduly affect the universal distribution
of basic (i.e. minimal) goods. Genetic discrimination statutes may be an effort in this
direction. Unfortunately, as I indicated, the exclusive focus on genetics constitutes a
problem, both in terms of feasibility and the moral terms of justice.
It is worth mentioning again that even if some of these insurance contracts cannot
be qualified as social goods, access to them can still be of major importance. Some in-
surance contracts clearly seem be part of a set of core market items, thereby belong to
the sphere of Money and Commodities. A life insurance contract under which an in-
surer accepts to pay out three million dollars to one’s spouse, for example, cannot be
qualified as a social good to which all should have access. Such a contract seems to be
an extravagant personal choice and as such does not merit pfiblic protection. But what
about a life insurance contract for CDN $100,000? If this contract is not needed for
access to ownership, and if appropriate welfare provisions are in place to limit the
vulnerability of the surviving family, could one still argue that all should have access
to it? Being able to buy this good may very well be a major symbol of full member-
ship in society.
Walzer recognizes that it is not feasible and morally unnecessary to distribute
money and commodities in the same way as social goods, but that does not mean that
they play no significant role in society, a role which may justify at least some minimal
intervention for the purposes of redistribution. Invoking the sociologist Lee Rain-
water, he argues that “in America today and in every society where the market is tri-
umphant, commodities mediate membership. Unless we own a certain number of so-
cially required things, we cannot be socially recognized and effective persons'””
Since “[c]ommodities are symbols of belonging,”‘ ” it is appropriate to ensure that all
people have access to some core set of these goods. It would be difficult to argue that
any form of insurance-as-commodity would have to be accessible to all in every cir-
cumstance, since that would give it the character of a social good. At the same time, it
would be appropriate to argue for protection and regulatory intervention if the devel-
opment of genetic testing were to have the incidental result that people who were af-
” Supra note 152 at 90.
Ibid. at 106.
“‘Ibid.
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fected by a given health condition were systematically excluded from access to a wide
variety of commodities. In that case, the integration of these people as full members
of society, and the promotion of access to goods in the market place should be a pri-
ority.
XIX. Regulatory Framework in Canada
In order to determine how these lessons can be implemented effectively in the
Canadian context, it is important to highlight briefly the regulatory regimes that are
affected by my discussion. An outline of the regulatory regime of our universal health
care system and of private insurance law is the focus of this section. I will argue that a
new regulatory structure is needed, one that does not necessarily focus on genetic dis-
crimination, but one that is able to take into consideration the impact of technological
revolutions on our health care system and on human rights issues in the context of
private insurance.
As I highlighted earlier, the discussion on genetic discrimination and the role of
insurance is influenced by and impacts on the system of health care in a given society.
Access to universal health care services in Canada is provided for by the Canada
Health Act.'” The Canada Health Act aims to ensure universal access to all “medi-
cally required” and necessary hospital and physician services. Problems occur when
interpreting what this means, since there is no definition of these terms and no criteria
are given for interpreting them. For the purposes of this discussion, it suffices to say
that in the Canada Health Act there is a clear recognition of health care as a social
good, and of the need to give access to this good irrespective of one’s ability to pay.
Advances in genetics should provide further fuel for debate over what counts as a
“medically required” service. These debates will be marked by questions concerning
what types of genetic services should be covered by provincial health insurance
schemes, when genetic testing is sufficiently informative to be used in the clinical
context, who should have access to these tests. A recent Ontario decision, compelling
the Ontario Health Insurance Plan to cover BRCA1 and BRCA2 testing highlights the
importance of these issues.'” As mentioned earlier, the increased need for drug insur-
ance, further spurred by developments in pharmacogenetics, highlights the impor-
tance of a public debate on the need for a comprehensive, universal pharmacare plan.
A recent survey reported in The Globe and Mail reveals that the use of prescription
drugs has increased dramatically over the last few years, while twenty-seven percent
of Canadians have no private or public drug coverage at all.”‘ Another study, under-
taken by the Canadian Institute of Health Information, indicates that for the first time,
Canadians are spending more money on drugs than on doctors’ fees.” Since there is a
“‘ R.S.C. 1985, c. C-6.
‘”See Caulfield, supra note 15 at 1122.
“‘A. Picard, “Prescription Spending Soaring” The Globe and Mail (20 December 1999).
6A. Picard, “Drugs Now Cost Canadians More Than Doctors’ Fees” The Globe and Mail (17 De-
cember 1999).
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clear recognition of health care as a social good, we have to give serious consideration
to the impact of privatization of health care services combined with a further devel-
opment of genetic testing. Lessons from the United States have to be taken seriously
and are a serious warning that comprehensive health care should not only continue to
be provided on the basis of need, but also that such a system could be hampered and
undermined by unfettered privatization. There has to be more discussion on how the
system can be strengthened.'” Developments in genetics make it urgent to do more to
assure appropriate coverage on the basis of need.
There is currently no Canadian legislation that addresses the issue of genetic dis-
crimination in the context of private insurance contracts. Whether or not people can
be excluded from insurance on the basis of genetic traits is thus determined according
to the general legislative regime governing insurance.”‘ It has been clearly established
that the regulation of insurance falls under provincial jurisdiction, under the property
and civil rights power, even if many aspects of insurance are interprovincial in
scope.'” The interprovincial nature of insurance led the common-law provinces and
territories in the 1920s to develop quasi-uniform regulations, commonly referred to as
the Uniform Insurance Act. These regulations are very similar to the insurance rules in
the Civil Code of Qudbec (“C.C.Q”), the only province that did not join the effort.
While a detailed discussion of these rules is beyond the scope of this paper, it would
be worthwhile to consider the general regulatory structure within which genetics may
become an issue, including the human rights framework a it relates to distinctions
made in insurance underwriting.
As in other jurisdictions, insurance contracts are contracts of utmost good faith
(uberrimafides), in which truthful exchange of information is essential. Insurance ap-
plicants have a duty to reveal every fact within a person’s knowledge that is material
to the insurance. There are two elements to this obligation: applicants have to declare
facts that are first, “within their knowledge”, and second, material to the risk.”‘ The
availability of genetic information may cause problems of interpretation with respect
to both components.
Discussion of the first aspect will involve the consideration of complex philo-
sophical questions with a very practical component: what constitutes knowledge and
when can people really be expected to possess it? What allowances are made for the
“‘ For an interesting discussion of how legal challenges of funding decisions by provincial govern-
ment under the Canada Health Act could be used as a political tool to strengthen the Canadian health
care system, see S. Choudhry, “The Enforcement of the Canada Health Act’ (1996) 41 McGill LJ.
461.
‘ For a more detailed discussion of insurance legislation in Canada, see D. Norwood & J.P Weir,
Norwood on Life Insurance Law in Canada, 2d ed. (Toronto: Carswell, 1993); D. Lluelles, Procis des
assurances terrestres, 3d ed. (Montreal: Themis, 1999).
“‘ Constitution Act, 1867 (U.K.), 30 & 31 Vict., c. 3, s. 92(13), reprinted in R.S.C. 1985, App. IL
No. 5; Citizens Insurance Co. v. Parsons (1881), 7 A.C. 96 (P.C.); Canadian Indemnity Co. v. British
Columbia (A.G.), [1977] 2 S.C.R. 504,73 D.L.R. (3d) 111. 11 N.R. 466.
” See Norwood & Weir, supra note 188 at 299-304.
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401
possibility of misunderstanding or forgetfulness?.. It is easy to presume that appli-
cants are aware of information available in their medical files. We should be wary of
the presumption that ideally open and comprehensive communication exists between
patients and health care providers. Further, knowledge of facts is not equal to an un-
derstanding of their relevance. This point is of particular importance in the context of
genetics. Many physicians are likely to encounter problems with respect to fulfilling
their duty to inform patients of the meaning of complex genetic information.'” Even
in the more familiar domain of cancer genetics, Eric Kodish stresses that “[c]linicians
should … recognize their own limitations in this rapidly changing field” and “must
educate themselves:”‘ Given limited understanding and lack of education on the part
of physicians, it surely is reasonable to expect limited understanding on the part of
those undergoing testing.
Audet” demonstrates how people may interpret genetic risk information very dif-
ferently than insurers. Even choices regarding the terminology used to describe the
meaning of a particular genetic disorder or genetic mutation may depend very much
upon a person’s perspective. What is a “physical anomaly” to an insurer may some-
times seem more or less irrelevant to a person who has learned to cope with this in-
visible threat.
The materiality of information is equally contentious, and even more so in the
context of genetics. The information insurance applicants have to declare is to be
relevant to the risk against which they are insured. Insurers must demonstrate, through
the use of actuarial tables, reasonable grounds for using this type of information in the
calculation of a particular premium. Information resulting from genetic testing is of-
ten premature and subject to varying interpretation.'” Insurers would likely experience
difficulty in coming up with actuarial tables when a new genetic study first suggests a
link between a genetic mutation and a susceptibility to disease. As we mentioned ear-
lier, statistical data in genetics is still very much in flux. Association rates between
mutations and particular diseases often change after larger population studies are un-
dertaken. Insurers try to cope with this by constantly updating their actuarial tables,
but frequent fluctuations in findings may still complicate matters for both applicants
… It should be mentioned that the sanction for non-disclosure is significantly softened by the “in-
contestability period”. The common law provinces and Quebec prescribe that failure to disclose a
material fact no longer renders a contract voidable after two years if the insured acted in good faith:
Insurance Act, R.S.A. 1980, c. I-5, s. 254; Insurance Act, R.S.B.C. 1996, c. 226, s. 42; Insurance Act,
R.S.M. 1987, c. 140, s. 162; Insurance Act, R.S.N.B. 1973, c. 1-12, s. 146; Accident and Sickness In-
surance Act, R.S.N. 1990, c. A-2, s. 21; Insurance Act, R.S.N.S. 1989, c. 231, s. 83; Insurance Act,
R.S.O. 1990, c. 1.8, s. 184; Insurance Act, RS.P.E.. 1988, c. I-4, s. 133; art. 2424 C.C.Q.; Saskatche-
wan Insurance Act, R.S.S. 1978, c. S-26, s. 147; Insurance Act, R.S.O. 1990, c. 18, s. 184.
92 Caulfield, supra note 15 at 1123.
’93 E. Kodish et aL, “Genetic Testing for Cancer Risk: How to Reconcile the Conflicts” (1998) 279
J. Am. Med. Assoc. 179 at 180.
” Supra note 20.
’95 Glass et aL, supra note 109 at 6-8.
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who have to declare information and for insurers who have to use reasonable distinc-
tons. Determining the sufficiency of statistical evidence is difficult, and insurers may
be tempted to use premature data in order to play it safe or may simply refuse cover-
age because of a lack of statistical data, as was highlighted by the recent case of J. v.
London Life.'”
The duty to disclose relevant information is to be judged according to the per-
spective of the average, reasonable insurer. The rule of thumb is: what would a rea-
sonable insurer want to know in assessing an applicant’s insurability and in calculat-
ing a premium that is commensurate to the person’s risk status? Genetic information,
which often reveals more detailed information about people’s risk for disease than in-
formation gained from other types of medical tests, is likely to be of interest to a rea-
sonable insurer who is attempting to establish a detailed risk profile.
How do insurers obtain this information? In individual underwriting, insurers will
conduct an interview, ask applicants to fill out a questionnaire, submit them to specific
tests and ask that they sign a waiver of confidentiality. This waiver of confidentiality
entitles insurers to access the medical files of the applicants. Insurers can do so at the
time of underwriting, or, as is often the case, when they receive a request for payment.
In the latter case, they have a clear interest in verifying whether or not the insured
withheld or tried to hide any information at the time of application, or whether the
cause of death or disability was not one that is excluded from coverage. In Frenette v.
Metropolitan Life Insurance,” the Supreme Court confirmed that confidentiality of
medical records can be waived without restriction as to time or scope of access. This
means that if no time limit is specified and if there is no restrictive clause in the
waiver, insurers have a right to access the entire medical record of the insured for an
indefinite period of time.'” The Supreme Court rejected the argument of the Court of
Appeal, that to give insurers unlimited access amounts to letting them undertake
“fishing expeditions” that violate the right to privacy.
The waiver of confidentiality usually also contains a clause permitting insurers to
transmit information about an applicant’s risk status to the Medical Information Bu-
reau in order to verify any information about the applicant held by the Bureau. The
Medical Information Bureau is a non-profit association of more than 700 American
and Canadian insurance companies. It functions as a central register for medical-
actuarial statistics, and it exchanges medical information on insurance applicants. In-
formation on individual applicants for health, life, and disability insurance is entered
‘ Supra note 133.
[1992 I S.C.R. 647,89 D.L.R. (4th) 653, 134 N.R. 169.
“‘In obiter, L’Heureux-Dub6 J. also suggested that courts could always order access to medical
files “where the state of the health of the holder of the privilege is the central issue of the case and
where there are no other means for a party to prove his case” (ibd. at 685-686). This means that even
in the absence of a waiver of confidentiality, insurers could easily argue that they need access to
medical files if they base their refusal on an issue of interpretation of health data. See Lemmens &
Bahamin, supra note 18 at 164-66 for a discussion of this case in light of genetic testing.
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in coded form in the Medical Information Bureau’s database, and insurers can verify
whether applicants have already applied to other companies and in what risk category
they were classified. The fact that an insurance applicant suffers from a genetic dis-
ease will be reported in coded form, without specification as to the precise condition.
People carrying the Huntington’s gene, for instance, will receive the three digit-code
for “a disorder of the nervous system” after their name.'”
As mentioned, insurers already require individual applicants to submit to medical
tests. For many insurance contracts, companies require HIV/AIDS tests, in particular
for life, disability, and additional health insurance contracts above a certain amount.
Other tests commonly required include a cotinine test to detect smoking and a test to
detect the applicant’s risk for prostate cancer. There is nothing that prohibits insurers
from using genetic testing to determine risk status, and no legislation that defines spe-
cific standards to be respected when introducing new testing methods. Insurers would
not have to provide, for example, appropriate genetic counselling for their insurance
applicants. Nor is there any obligation to use qualified testing facilities, which follow
strictly determined standard procedures.
It is worth noting that the standards for
regulating genetic testing are also lacking outside the domain of insurance, even
though, as Timothy Caulfield points out, “[tihere is concern that pressure from the
growing biotechnology industry, coupled with understandable public excitement, will
induce premature implementation and inappropriate use of some testing services:
Recall, however, that genetic information is not gathered exclusively from test re-
sults. For some time, it has been standard practice to use family histories, obtained by
questioning applicants and analyzing medical files. Increasingly, genetic information
is being included in medical files, which can be accessed by insurers. The Medical In-
formation Bureau also has limited information on disease categories, which may hint
at the existence of a particular genetic disorder.
On the basis of the information provided by applicants through questionnaires,
through tests and through further investigations, insurers attempt to establish the de-
gree of risk associated with the application. Depending on the type of insurance, the
risk corresponds to the likelihood that insurers will have to pay out on a policy be-
cause of death, disability or health care costs. People are categorized into different
risk groups, usually framed as “standard, substandard, and uninsurable’ On the basis
of available information and the resulting categorization, insurers decide what premi-
ums to charge applicants, according to a set of premium tables. This entire sequence
of gaining information, categorizing risk status and setting premiums is the under-
writing process. As I will discuss further, insurers have a great deal of discretion in
9 See Lemmens & Bahamin, ibid at 167-69.
Professional genetic counselling is generally considered to be a pro-condition for undertaking
genetic testing. For a general discussion of the ethical issues and the needed safeguards for genetic
screening, see Andrews, supra note 117; Burgess, Laberge & Knoppers, supra note 110.
2” Caulfield, supra note 15 at 1122 [footnotes omitted].
MCGLL LAW JOURNAL / REVUE DE DROITDE MCGLL
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deciding what constitutes an acceptable underwriting practice. The insurance industry
more or less sets its own standards for actuarial practices.
XX. Human Rights Exceptions for Insurance Discrimination
In the underwriting process, insurers weigh various personal characteristics that
fall under the category of prohibited grounds for discrimination as specified in the
the Canadian Human Rights Act’ and the Canadian
provincial human rights codes,
Charter of Rights and Freedoms.’ Insurers clearly discrininate-i.e. treat people dif-
m Human Rights Act, R.S.A. 1970, c. 178; BCHRA, supra note 111; Human Rights Act, R.S.M.
1987, c. H175 [hereinafter MHRA]; Human Rights Code, R.S.N.B. 1973, c. H-11 [hereinafter
NBHRC]; Human Rights Code, R.S.N. 1990, c. H-14 [hereinafter NHRCJ; Human Rights Act,
R.S.N.S. 1989, c. 214 [hereinafter NSHRA]; Human Rights Code, R.S.O. 1990, c. H.19 [hereinafter
OHRC]; Hiuman Rights Act, R.S.P.E.I. 1988, c. H-12 [hereinafter PEIHRA); Charter of Human Rights
and Freedoms, R.S.Q. c. C-12 [hereinafter Quebec Charter]; Saskatchewan Human Rights Code, S.S.
1979, c. S-24.1 [hereinafter SHRCI.
… R.S.C. 1985, c. H-6.
Canadian Charter of Rights and Freedoms, Part I of the Constitution Act, 1982, being Schedule
B to the Canada Act 1982 (U.K.), 1982, c. 11 [hereinafter Charter]. The Charter does not apply di-
rectly to private insurance practice, which is governed by provincial law, but the federal and the pro-
vincial governments and legislators must respect Charter rights. Provincial insurance acts and the
provisions in the provincial human rights acts with respect to insurance could be submitted to a s. 15
analysis. S. 15 of the Charter prohibits discrimination based on race, national or ethnic origin, colour,
religion, sex, age, or mental and physical handicap. However, s. I introduces a proportionality princi-
ple and allows for limitations on individual rights if these are reasonable and demonstrably justified in
a free and democratic society. The approach of the human rights acts to allow discrimination for in-
surance purposes if the distinctions made are “reasonable and bonafide” or “genuine” allow for the
type of proportionality assessment involved in a s. 1 analysis. The Charter could also be invoked to
challenge the legitimacy of governmental decisions with respect to funding of health care programs,
including genetic testing services. For an interesting discussion of this possibility, see R. Mykitiuk &
S. Penney, “Screening for ‘Deficits’: The Legal and Ethical Implication of Genetic Screening and
Testing to Reduce Health Care Budgets” (1995) 3 Health LJ. 235. In the wake of the Supreme
Court’s decision in Eldridge v. British Columbia (A.G.), [1997] 3 S.C.R. 624, 151 D.L.R. (4th) 577,
218 N.R. 161, a careful scrutiny can be expected of how health care funding decisions that impact on
a particular group’s access to health care services may constitute adverse effect discrimination. It
would also be interesting to consider whether specific provincial genetic discrimination statutes, pro-
tecting individuals with genetic mutations against exclusion from insurance while allowing discrimi-
nation against people suffering from a non-genetic predictive health factor, would pass Charter scru-
tiny. Arguments invoked in this paper suggest that there is here reason for concern. Such analysis will
be the focus of further research. In Battlefords and District Co-operative v. Gibbs, [1996] 3 S.C.R.
566, 140 DL.R. (4th) 1, 203 N.R. 131, the Supreme Court had already dealt with a group employ-
ment benefits plan that made a distinction between different types of disability, in this case mental and
physical disability. According to the plan, designed to insure employees against the income-related
consequences of becoming disabled, people suffering from physical disability could obtain life-long
support, whereas people with mental disabilities could only receive support for a maximum of two
years. The Court stated that this plan violated s. 16 of the SHRC, supra note 202, which prohibits dis-
crimination with respect to employment or any term or condition of employment. However, s. 16 does
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ferently-because of age, sex, health, disability and sometimes marital and family
status. Differentiating between people according to risk status, and charging them dif-
ferent premiums accordingly, is an essential feature of the underwriting process. It is
of the nature of private insurance that people pay premiums commensurate with risk
status. Most human rights statutes explicitly recognize the validity of this practice by
providing an exception to the prohibition against discrimination for insurance pur-
poses. The exceptions provided for under the provincial human rights statutes are de-
scribed with different terminology in each statute. For example, depending on the
provincial statute, distinctions must be “reasonable and bona fide in the circum-
“based on a genuine qualification,” “warranted” and based on “actuarial
stances’
data,’ or such “that the insurance or annuity can be provided only if the distinction is
permitted” ‘
For the purposes of this paper, it is worthwhile to discuss briefly under what cir-
cumstances insurance discrimination has been held to be “reasonable and bonafide”
The Supreme Court clarified this issue in Zurich Insurance v. Ontario (Human Rights
Commission).’ This case dealt with discrimination against young, single, male driv-
ers in the calculation of automobile insurance premiums by the Zurich Insurance Co.
The insurance company argued that this distinction was defensible “on reasonable and
bona fide grounds” and thus fell under the scope of the exception provided for by
section 21 of the OHRC. Section 21 allows insurance companies to make distinctions
“on reasonable and bonafide grounds because of age, sex, miarital status, family status
or handicap ” ”
In discussing the case, Justice Sopinka, speaking for the majority of five, recog-
nizes the tension between insurance practices and human rights law:
The determination of insurance rates and benefits does not fit easily within tra-
ditional human rights concepts. The underlying philosophy of human rights
legislation is that an individual has a right to be dealt with on his or her own
merits and not on the basis of group characteristics. Conversely, insurance rates
are set based on statistics relating to the degree of risk associated with class or
group of persons!”
He then goes on to specify the criteria that one should use in determining whether
discriminatory insurance clauses are acceptable. While the decision focuses on the
not contain an insurance-related exception and the Supreme Court explicitly recognized that it there-
fore could not consider whether there could be special insurance-related reasons to justify such dis-
crimination.
“0 OHRC, supra note 202, s. 11 (2).
m6PEIHRA, supra note 202, s. 14(1)(d).
Quebec Charter, supra note 202, s. 20.1.
MHRA, supra note 202, s. 7(2)(b).
[1992] 2 S.C.R. 321, 93 D.L.R. (4th) 346, 138 N.R. 1 [hereinafter Zurich Insurance cited to
S.C.R.].
2 “0Supra note 202, s. 21.
2 Supra note 209 at 338-39.
MCGILL LAW JOURNAL/ REVUE DE DROIT DE MCGILL
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“reasonable and bona fide” justification of the OHRC, the Court’s analysis can be
used to interpret the proportionality of the insurance discrimination as allowed under
other human rights statutes.
The Court found that a discriminatory practice is reasonable, if, first, it is based
on a sound and accepted insurance practice and, second, there is no practical alterna-
tive. 22 The first condition allows practices that are desirable “for the purpose of
achieving the legitimate business objective of charging premiums that are commensu-
rate with risk'”” With the second condition, the Supreme Court rejects the argument
put forward by the Human Rights Commission, which suggested that an insurance
company must demonstrate that the very essence of its business would be undermined
if it could no longer rely on discriminatory group characteristics to determine premi-
ums. The Supreme Court sets a less stringent standard, namely that it is sufficient to
show that an alternative approach would be “impractical:” ‘ The Court considered it
sufficient that the insurance company had credible actuarial evidence to support its
claim.
If we are to follow this line of reasoning, insurers may use genetic information
and discriminate against people with genetic susceptibilities in underwriting if they
can demonstrate that such discrimination is based on a sound and accepted insurance
practice that aims at achieving the business objective of charging premiums that are
commensurate with risk. If they are able to support their practice with statistical and
actuarial tables and can show that there is no practical alternative, insurers will be able
to use genetic information in the underwriting process. Since most genetic tests aim at
indicating a specific risk factor, based on statistical calculations, it would not be diffi-
cult for insurance companies to justify the use of genetic information and of genetic
testing. Insurers could argue that they have no practical alternative but to obtain the
same level of accurate information as may be obtained through genetic testing. As
mentioned earlier, insurance is based on a full disclosure of risk. Insurers would argue
that they must be able to use genetic testing to obtain information that insurance ap-
plicants may otherwise try to hide. Insurers would have no possibility of verifying
whether applicants are at high risk for death or disability and are aware of their high-
risk status.
XXI. Curbing Potential Negative Consequences of Genetics in
Canadian Health Care and Insurance
I have argued thus far that, while genetics may not necessarily raise a bevy of en-
tirely new ethical and legal issues, it does add to existing concerns and problems. One
example is the impact it might have upon access to health care and private insurance.
Developments in genetics might thus be said to contribute to existing problems by
“, Ibid. at 342.
..3 Ibid. at 342-43.
24 Ibid at 350.
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407
raising issues regarding the personal, familial, and ethnic relevance of information,
through the high predictive character of many test results in combination with re-
maining uncertainty, and by the fact that so much information can be gathered from
one sample. This cluster of issues, and the commercial interests involved, provide
clear grounds for caution. Advances in genetics will likely have a significant impact
on social structures, health care systems, and individual, familial and societal well-
being. There are legitimate fears surrounding the risk-to-benefit ratio if developments
in genetics were to be applied in an inequitable social context.
I have argued that discrimination statutes focusing on genetics may not be the
best solution for Canada, but this should not be taken to imply that there should be no
regulatory or policy initiatives. Such initiatives would be most appropriate, and they
are-I would argue-urgently required. By comparison to the panoply of interna-
tional and national initiatives in Europe and the United States, the regulatory silence
in Canada is remarkable. More than eight years ago, Bartha Maria Knoppers already
argued in a paper commissioned by the Law Reform Commission of Canada that
the three areas of genetic testing (workplace, insurance and reproductive test-
ing) pose risks of adverse genetic discrimination while at the same time pro-
viding information on cause and prevention. It is not too early to begin a so-
cietal debate on these issues with the aim of developing a coherent policy re-
spectful of human rights and dignity.2″
Since then, the Royal Commission on New Reproductive Technologies issued its re-
port,” ‘ which was followed by the legislative initiative of Bill C-45, the Human Re-
productive and Genetic Technologies Act.” No substantial debate on the use of ge-
netics in the context of insurance and employment has taken place. The following
recommendations provide a framework for engaging in the societal debate recom-
mended by Knoppers and more recently by international guidelines.
XXII. Proposals For Specialized Commissions Responsive to
Societal Concerns
Is it possible to envisage a system lending itself to fostering continuing public de-
bate over the shifting role and meaning of insurance in society? Shifts in roles of such
social institutions may be the result of internal institutional changes, political choices
or new economic realities, but they may also, as emphasized in this present paper, be
the result of technological revolutions.
2″ B.M. Knoppers, Human Dignity and Genetic Heritage: A Study Paper Prepared for the Law
Reform Commission of Canada (1991) at 58 [arhived with author].
“6 Canada, Royal Commission on New Reproductive Technologies, Proceed with Care: Final Re-
port of the Royal Commission on New Reproductive Technologies (Ottawa: Minister of Government
Services Canada, 1993).
2″7 Bill C-47, An Act respecting Human Reproductive Technologies and Commercial Transactions
Relating to Human Reproduction, 2d Sess., 35th Parl., 1996 (2d reading 5 November 1996).
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In light of the variety of factors involved, a regulatory system ought to be as re-
sponsive as possible to continuing changes in scientific knowledge in this area, and
respect the level of expertise required for understanding the mechanisms of change
and their relevance to members of society. Specialized commissions or agencies
should be formed for the purpose of advising both federal and provincial governments
with respect to the impact of genetic testing on social policy, health care and insur-
ance. These commissions or agencies should also receive regulatory powers with re-
spect to issues that fall within their jurisdiction.
These commissions should have an expansive focus, considering genetic infor-
mation, but also more fundamental questions of what is appropriate health care, what
is the role of private actors in this context, and how can we limit the negative social
consequences of new technology such as genetic testing?
I propose a double structure to review the impact genetics and other technological
advances may have in various social fields. On the one hand, continuing debate over
the future of health care is crucial. Such debate should aim at understanding how ge-
netic technologies may impact health care services, costs and accessibility. At the fed-
eral level, a specialized commission should be set up or integrated into existing struc-
tures, if this can be done without undermining its necessary independence. The com-
mission should have the appropriate links to provincial governments. The role of this
agency or commission should be twofold: first, it could serve as a federal “think-tank”
in which the impact of technological changes on the health care system can be dis-
cussed. Second, it could be used to recommend and implement regulation and control
over, for example, genetic testing facilities, if federal legislation is to be enacted in this
area.
The management regime of the proposed legislation on new reproductive tech-
nologies could be used as a model for a commission with regulatory powers!” The
proposal for a specialized Advisory Committee on Genetic Testing by the Task Force
on Genetic Testing of the National Institutes of Health in the United States is also an
interesting model for such a commission’ According to the Task Force, the members
of this Advisory Committee should represent professional interests (medicine, genet-
ics, pathology, genetic counselling), the biotechnology industry, consumers, insurers,
and other interested parties. For its more reflective work, the commission could be in-
spired by the work and activities of the National Bioethics Advisory Commission” in
the United States. The recently established Canadian Biotechnology Advisory Com-
” Canada, Minister of Health, New Reproductive and Genetic Technologies: Setting Boundaries,
Enhancing Health (Ottawa: Minister of Supply and Services, 1996).
19 N.A. Holtzman & M.S. Watson, eds., Promoting Safe and Effective Genetic Testing in the United
States: Final Report of the Task Force on Genetic Testing (Baltimore: Johns Hopkins University Press,
1998) [hereinafter Final Report of the Task Force on Genetic Testing].
2″ See online: National Bioethics Advisory Commission
cessed: 19 January 2000).
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T LEMMENS – GENETIC DISCRIMINATION AND INSURANCE
mittee may also prove to be a useful model for the type of reflective and advisory
work that needs to be done in the context of new technologies.2 ‘
While various other committees already exist, including the latter, which could be
involved in discussing some of the aspects of new genetic technologies, it is crucial to
adapt membership and provide an appropriate mandate to such agency. Other com-
mittees may be focusing on particular aspects of the health care system, reside within
the structure of funding agencies or may be dominated by professional or economic
interest groups. The proposed commission should include representatives from gov-
ernment, consumer and patient groups, health-care specialists and policy experts,
medical specialists, insurance representatives, and others representing those who
could be affected by developments in genetic testing. Depending on the issues under
discussion, additional or alternate members may be required to represent those who
could be affected by developments in genetic testing. For example, this agency could
also be used to have an open discussion of genetic or other testing in the workplace.
Wide representation would help to ensure the democratic character of the com-
mission and would facilitate social support for its recommendations. This federal
health care commission should develop recommendations with respect to services to
be covered and should analyze other global impacts of genetics on our health care
system. The commission should focus its attention on maintaining the integrity of the
goals of our health care system, based on our particular recognition of health care as a
social good which all should have on the basis of need, irrespective of one’s ability to
pay. With respect to genetic testing, it should assess the feasibility of developing fed-
eral regulations and make recommendations on federal and provincial interventions.
Some of the important questions it will have to struggle with are: how essential is
it that the government controls the distribution of health care? To what extent can pri-
vate actors play a role in the distribution of some of these goods? If there were a role
for private partners, what type of control by governmental agencies would be re-
quired? The commission should develop or recommend educational programs and
distribute new information to various stakeholders. At the provincial government
level, there is also a need for debate on how health care is allocated and distributed
and how new technologies, including genetics, impact health care expenditures. A
similar advisory body could be established to advise provincial ministers of health.
In light of the increasingly important role of private insurance and the particular
problems that may be created by developments in genetics, it is important to develop a
system capable of dealing with discrimination in insurance. Although some protection
2’The Canadian Biotechnology Advisory Committee is “an expert, arm’s-length committee created
under the renewed Canadian Biotechnology Strategy (CBS) to advise [federal] Ministers, raise public
awareness and engage Canadians in an open and transparent dialogue on biotechnology matters”
(Canadian Biotechnology Secretariat, News Release, “20 Members Appointed to Canadian Biotech-
nology Advisory Committee” (27 September 1999)). It has the mandate to advise the government on
broad policy issues associated with the ethical, social, regulatory, economic, scientific, environmental
and health aspects of new biotechnology.
410
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is currently provided through provincial human rights codes, the Supreme Court’s in-
terpretation of “reasonable and bonafide” distinctions has given the industry too great
a degree of discretion. Moreover, the system may provide some post facto relief, but it
does not prevent discriminatory practices. Some protection, however, is provided
through provincial human rights codes.
The committee structure needed is one that would have regulatory authority.
Some provincial human rights codes give substantial power to human rights commis-
sions in determining what constitutes acceptable discrimination for insurance pur-
poses.’ This is a useful model, but the committee structure should be adapted so that
it is representative of the different stakeholders and so that it has the necessary scien-
tific, legal, and ethical expertise. The presumption should be against the introduction
and use of new technologies to determine insurability, and the commissions should be
able to react and issue specific authorization if new tests seem appropriate in particu-
lar circumstances. The commissions should also investigate the possibility of regulat-
ing the access to medical files by third parties, such as insurers.
As mentioned in the discussion of the federal advisory commission, this commit-
tee structure could prove useful in discussing and regulating other areas, such as the
use of testing technology in the context of employment.m Why not have specialized
subcommittees attached to existing human rights tribunals, set up to issue specific
regulations and guidelines with respect to, for example, the introduction of new ge-
netic tests in the context of insurance and employment?
Even if there are good reasons for considering insurance contracts as commodi-
ties, there may be overriding concerns that ought to be taken into account when ana-
lysing the appropriateness of complete reliance on the rules of the market. Such over-
riding concerns can be of an essential symbolic nature, such as the prohibition of dis-
crimination on the basis of race, ethnic origin, sexual orientation, or the status of
“battered women”. Discrimination on some of these grounds is currently prohibited
even for insurance purposes. It would seem difficult to argue that it is inappropriate to
allow a weighing of other interests by a specialized, representative commission in de-
termining the reasonableness of discriminatory practices in insurance. Vaughan Black
argues similarly in a case comment on the Ontario Court of Appeal’s decision in the
Zurich case. According to Black,
It would be odd indeed for the Code to rely on the “symbolic” argument for
banning entirely insurance classifications on the basis of race, yet make such
considerations irrelevant to the evaluation of permitted classifications such as
sex.~
-‘ See e.g. NBHRC, supra note 202, s. 5(2); NHRC, supra note 202, s. 6(2); NSHRA, supra note
3 See T. Lemmens, “What About Your Genes? Ethical, Legal, and Policy Dimensions of Genetic
202, s. 15(2); PEIHRA, supra note 202, s. 33(2)(b).
Testing in the Workplace” (1997) Polit. Life Sci. 57.
22 “Case Comment: Zurich Insurance Co. v. Ontario (Human Rights Commission)” (1990) 45
C.C.L.I. 304 at 308.
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T LEMMENS – GENETIC DISCRIMINATION AND INSURANCE
There can be circumstances in which genetic information has such a symbolic, stig-
matizing character, that allowing it to be used for insurance purposes would be con-
sidered inappropriate per se.
Currently, insurers set their own standards for classification schemes and the
types of statistical information that support them. They defend their policies with ref-
erence to the rules of a game they establish and control. Within the rules of the game,
they can claim the fairness of unequal distributions. At the same time, they profit from
the increased importance of their products and enter a sphere in which the social
meaning and importance of the goods they distribute is less clearly defined. In light of
these considerations, it seems appropriate to promote a system wherein insurers are to
be made more accountable for their practices. Under such a system, the profit-based
rationale of insurance rules would have to be balanced against the basic (i.e. minimal)
needs of members of the community. Further attention needs to be paid to the issue of
reconciling the economic realities of the insurance industry with social needs.
Continuing assessment by a specialized and interdisciplinary commission offers a
number of advantages: it would enable discussion between various stakeholders and
promote public support for both the public and private providers of health care and in-
surance; this may very well include public support for the use of some genetic infor-
mation in insurance. The commission would prevent the premature use of preliminary
genetic test results and would protect individuals participating in research. It would
prevent insurance companies from being pressured into adopting practices simply be-
cause competitors have done so before them. The commissions could also set stan-
dards for genetic testing, including quality standards for testing facilities and provi-
sions for genetic counselling. Dialogue between stakeholders, and the obligation of
responsible members to be informed of new developments and to educate the organi-
zations and communities to which they belong, could also promote public education.
The commissions could be involved in educational efforts of both insurers and the
public. The commissions could impose restrictions on new tests and oblige insurers to
submit regular reports once a new test is allowed, for example, to verify changes in
actuarial evidence. Ongoing analysis and discussion could be an essential function in
maintaining the standards set by such commissions. They could also discuss the rela-
tionship between private insurance and the health care system, and make recommen-
dations to the appropriate authorities when they find that particular goods are not be-
ing appropriately distributed through the private market for example, because the eco-
nomic reality of insurance does not allow certain restrictions.
Various international initiatives and recommendations support this approach. As
mentioned earlier, the Task Force on Genetic Testing recommends the establishment
of a specialized committee, as well as the need for safety standards, quality control of
testing facilities, and education of stakeholders.’ By appointing an independent ge-
neticist as consultant, the Association of British Insurers also recognized how impor-
2’Final Report of the Task Force on Genetic Testing, supra note 219.
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tant external and scientifically sound assessment of genetic technology is, both for the
insurers and for the public. ‘ Insurers have to keep abreast of new genetic informa-
tion, while the public wants to be reassured that insurance decisions will be based
upon an independent expert assessment of the value of the risk-information. The
Draft Guidelines, prepared for the World Health Organization by Abdullah Daar and
Jean-Frangois Mattei, warn that “hurried and premature legislation in the rapidly
evolving field of human genetics can be counterproductive:’ but it also urges for na-
tional regulations for genetic testing and for mechanisms to monitor further develop-
ments.’
This call for more social debate on the reasonableness of distinctions in private
insurance is in line with the dissenting opinion of Justice L’Heureux-Dub6 in Zurich
Insurance. L’Heureux-Dub6 J. lambasted the insurance company for not maldng any
effort to find new ways of obtaining useful statistical information: “No human rights
legislation could ever attain its objectives if discrimination could be justified by the
self-serving claim that a practice ‘has always been done this way.”‘ Furthermore, “[i]f
this were so, complacency and a history of discrimination would be rewarded at the
cost of progress and the recognition of higher societal norms of behaviour.”‘ The de-
velopment of genetic testing should focus attention on how some of these “higher so-
cietal norms of behavior” could be affected if means for public discussion of these
new technologies are not found.
Creation of fora for public debate would be a valuable democratic tool-it would
help us to determine the bounds of justice, and the social meaning of different goods.
Walzer states it succinctly:
A given society is just if its substantial life is lived in a certain way—that is, in
a way faithful to the shared understandings of the members. (When people dis-
agree about the meaning of social goods, when understandings are controver-
sial, then justice requires that the society be faithful to the disagreements, pro-
viding institutional channels for their expression, adjudicative mechanisms, and
alternative distributions.)=
Supra note 59.
I Ibid.
Supra note 32.
22 Zurich Insurance, supra note 209 at 378.
a Walzer, supra note 152 at 313.
