Genetics, Parenting, and Children’s Rights
in the Twenty-First Century
Patrik S. Florencio”
Not only do genetic traits sometimes translate into
physical and mental illnesses, they may also manifest
themselves as tendencies towards certain behaviours.
This discovery has led to the misinterpretation and
misapplication of genetic information, and has been di-
rected to unforeseen uses, from criminal defence to ge-
netic racism. The issue is especially sensitive when de-
ciding if and when parents should have access to the
genetic information of their children.
The author begins with an overview of the princi-
ples of behaviourai genetics and types of behaviour
currently under study. Next, the social and psychologi-
cal risks associated with genetic testing are presented,
along with guidelines necessary to distinguish between
testing which is therapeutic and that which is non-
therapeutic. The distinction is a crucial one, as the
author proposes a therapeutic-benefit test, advocating
testing only where an effective intervention is available.
Finally, the author concludes that legislation is the
more appropriate medium for defining the extent of pa-
rental rights once intervention is allowed rather than
leaving physicians to decide on a case-by-case basis.
et
applications
interpretations
Non seulement certains traits gdn~tiques se tra-
duisent-ils par des maladies physiques et mentales,
mais d’autres se manifestent par des pr~dispositions A
certains comportements. Cette d6couverte a men6 A de
mauvaises
de
l’information gEn~tique, ainsi qu’A des usages impr6-
vus, dont son utilisation en defense dans le contexte du
droit p~nal et le racisme g6n~tique. Les questions sou-
leves sont particulirement d~licates lorsqu’il s’agit de
dbcider si, et 4 quel moment, les parents devraient avoir
accas A l’information g~n~tique relative A leurs enfants.
L’auteur commence par un survol des principes
de Ia g6ndtique comportementale et de certains types
de comportement actuellement sous 6tude. Il fait en-
suite Etat des risques sociaux et psychologiques asso-
ci6s au d~pistage g6ndque, et met de l’avant des lignes
directrices pour distinguer le d6pistage th~rapeutique
du d~pistage non-thdrapeutique. La distinction est cru-
ciale, car l’auteur propose que le test en soit un de bnE-
fice th~rapeutique, en vertu duquel le d6pistage ne se-
rait effectu6 que lorsqu’il existe un traitement efficace.
L’auteur conclut que l’intervention du l6gislateur
constituerait le moyen le plus appropriE de d6finir
fois que
l’6tendue
l’intervention a 6t6 permise, plutt que de laisser aux
mdecins l’autorit6 de d~cider au cas par cas.
des droits parentaux une
. Student, Faculty of Law, McGill University. B.Sc., Hons. (McGill), BCLLLB ’01. The author
would like to express his deep gratitude to Dr. Gillian O’Driscoll, associate professor in the Depart-
ments of Psychology and Psychiatry at McGill University, Timothy Caulfield, Research Director at
the Health Law Institute of the University of Alberta, and Margaret Somerville, from the Centre for
Medicine, Ethics and Law at McGill University, for their comments, suggestions, and criticisms of an
earlier version of this paper.
McGill Law Journal 2000
Revue de droit de McGil 2000
To be cited as: (2000) 45 McGill L.L 527
Mode de rfdrence: (2000) 45 RD. McGill 527
528
McGILL LAW JOURNAL / REVUE DE DROIT DE MCGILL
[Vol. 45
Introduction
I. What is Behavioural Genetics?
A. Basic Principles and Scientific Method
B. Current and Future Applications of Behavioural Genetics
1. Current Applications of Genetic Diagnosis
2. Future Applications of Genetic Diagnosis
II. Which Behaviours Have Already Been Studied?
Ill. Risks Associated With Behavioural Genetic Testing
A. The Risk of Neurogenetic Determinism
B. The Risk of Genetic Discrimination
C.
D. Biological Parenting
Impact of Testing on the Child and on Intrafamilial Relationships
IV. Suggested Guidelines
A. Monogenic Behaviours Posing Immediate and Serious Risks to the
Child
B. Monogenic Behaviours Whose Risks are Either Not Immediate or Not
Serious
C. Polygenic Behavioural Predispositions Posing Significant Risks or
Harms to the Child
D. Polygenic Behavioural Predispositions That do Not Pose Significant
Risks or Harms to the Child
V. Limiting Parental Access to Genetic Information
A. Locus of Parental Authority and Access to Genetic Information
B. Legal and Ethical Justifications
for Denying Access
to Non-
Therapeutic Testing
1. Non-Maleficence and “Primum Non Nocere”
2. Best-Interests Analysis
3. Respect for the Future Autonomy of the Child
C. Mechanisms of Limiting Parental Access to Genetic Information
1. Clinical Judgment of Health-Care Professionals
a. The Right of Health Care Providers to Refuse Demands for
Inappropriate Treatment
b. The Legal Obligation of Health Care Providers to Refuse De-
mands for Inappropriate Treatment
2. Legislation
Conclusion
2000] R FLORENCIO- GENETICS, PARENTING, AND CHILDREN’S RIGHTS
529
Introduction
As genetic readouts increase in power and decrease in cost, the potentialfor
intrusive applications will skyrocket. Future ELSI [ethical legal and social
issues] efforts will require acute scientific vision to anticipate the problems
and propose safeguards.’
Eric S. Lander, Massachusetts Institute of Technology, U.S.A.
The effects of these technologies seem beneficial in the here and now; it is
the fitture consequences that are worrisome.
Lee M. Silver, Princeton University, U.S.A.
In October of 1993, a group of distinguished scientists from the Department of
Human Genetics, University Hospital Nijmegen, and the Neuroscience Center of the
Massachusetts General Hospital reported an association between the gene that codes
for monoamine oxidase A (“MAOA”) and some abnormal behaviours, including ar-
son, attempted rape, and exhibitionism! Following publication, these scientists were
not only “stunned” by the general confusion and misinterpretation of their data but
also by the way certain members of society were willing to apply their findings. The
first individuals to demonstrate their eagerness to make use of these data were crimi-
nal defense attorneys who “wanted to test their clients on death row for MAOA defi-
ciency, hoping that it might exculpate them.” Soon after, talk-radio hosts began to
suggest that people carrying the MAOA marker should be sterilized
Genetic testing has a great deal to offer parents and their children when it comes
to the prevention or treatment of illnesses for which there exists a definitive therapeu-
tic intervention (surgical, pharmacological, and/or dietary) of proven efficacy. In the
absence of early detection and prevention, many genetic imperfections can translate
into physical as well as mental illnesses. For instance, testing for familial polyposis
coli followed by subsequent removal of the colon in the early teenage years can pre-
vent the onset of cancer.’ Early testing for phenylketonuria, a single gene metabolic
disorder, followed by subsequent dietary treatment in newborns can prevent the de-
E.S. Lander, “The New Genomics: Global Views of Biology” (1996) 274 Science 536 at 538.
2L.M. Silver, Remaking Eden: How Genetic Engineering and Cloning will Transform the American
Family (New York. Avon Books, 1998).
3 H.G. Brunner et aL, “Abnormal Behavior Associated with a Point Mutation in the Structural Gene
for Monoamine Oxidase A” (1993) 262 Science 578.
‘C.C. Mann, “Behavioral Genetics in Transition” (1994) 264 Science 1686 at 1689.
‘Ibid.
6P.A. Gabow, “Autosomal Dominant Polycystic Kidney Disease” (1993) 329 New Engl. J. Med.
332. Other examples of the benefit of early genetic testing include the prevention of familial hypertro-
phic cardiomyopathy with drug therapy (see BJ. Maron et aL, “Hypertrophic Candiomyopathy: Inter-
relations of Clinical Manifestations, Pathophysiology, and Therapy” (1987) 316 New Engl. J. Med.
844) and the prevention of familial hyperlipidemia with dietary restrictions (see JA. Cortner et aL,
“Familial Combined Hyperlipidemia in Children: Clinical Expression, Metabolic Defects, and Man-
agement” (1993) 123 J. Pediatr. 177).
McGILL LAW JOURNAL / REVUE DE DROIT DE McGLL
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velopment of mental retardation.: This paper will focus on the important issue of pa-
rental rights vis-4-vis their children’s biobehavioural information. More specifically,
the purpose of this paper is to consider whether parents ought to have a restricted or
an unrestricted right of access to the information contained in their children’s genome.
The need for precaution as biotechnology progresses will be particularly pro-
nounced when deciding which genetic tests and interventions ought to be approved
for clinical practice. Given that genetic biotechnology is still in its infancy, it is diffi-
cult to assess the biological, psychological, and socioeconomic risks that genetic
technology may pose to individual users. It is even more difficult to predict the cu-
mulative effects that genetic technology may have on society following long-term
clinical application.
Genetic research clearly has a powerful impact on society, which is partly attrib-
utable to the perceived association between scientific information and proven infor-
mation. Few people would question information that has been verified scientifically,
despite the fact that what science proves today it may disprove tomorrow. In the
twenty-first century, scientists will uncover a large and expanding quantity of gene-
behaviour associations. Such discoveries will raise new and interesting ethical and le-
gal dilemmas. Among the most significant future issues will be the need to decide
who should and should not have a right to access behavioural genetic information.
In light of these uncertainties, it is suggested that we adopt an approach to deci-
sion-making based on reasoned restraint. That is, for the time being, it is suggested
that only those genetic interventions offering immediate therapeutic benefits should
be approved for clinical practice. For instance, genetic testing can be said to offer
“immediate benefits” when it provides the patient or user with more than just predic-
tive information: secondary interventions of proven efficacy must also be available in
the event of a positive test result. In addition, genetic testing will only qualify as
“therapeutic” when the benefits of testing clearly outweigh the associated risks of
harms. When it comes to the application of genetic interventions to children, only
those interventions offering immediate therapeutic benefits to the child should be ap-
proved for clinical practice.
As our science evolves and as we gain better insight into the actual costs and
benefits of various behavioural genetic interventions, the need may arise to redefine
the precautionary boundary that is originally set to separate those interventions to
which parents have access (interventions offering immediate therapeutic benefits to
the child) from those to which they do not (interventions offering no immediate thera-
peutic benefits to the child). In the meantime, it would be wise to leave the door open
to the possibility of permitting exemptions from the general rule since exceptional and
currently unforeseeable circumstances may arise in which it would be in the child’s
‘C.M. Laberge & B.M. Knoppers, “Genetic Screening: From Newborns to DNA ILping” in C.M.
Laberge & B.M. Knoppers, eds., Genetic Screening: From Newborns to DNA Typing (Amsterdam:
Elsevier Science, 1990) 379.
2000] R FLORENCIO- GENETICS, PARENTING, AND CHILDREN’S RIGHTS
531
best interests to allow his or her parents access to genetic interventions notwithstand-
ing the absence of immediately visible therapeutic benefits.
I. What is Behavioural Genetics?
A. Basic Principles and Scientific Method
The basic principle underlying behavioural genetic research is that our genes are
responsible for the neuroanatomical and biochemical functioning of our brains and
nervous systems which interact with the environment to produce behaviour. Ignoring
for the moment the important role played by the environment, differences in behav-
iour can be explained by individual differences in genetic makeup since such differ-
ences result in the fact that we do not all share identically functioning brains. To use
the example of the reported link between the MAOA gene and abnormally aggressive
behaviour, a defect in the gene coding for MAOA leads to an inability of this enzyme
to metabolize certain chemicals in the brain leading in turn to an increased propensity
towards abnormal behaviour such as arson, attempted rape, and exhibitionism in cer-
tain individuals!
Two general categories of behavioural genetic research currently exist: quantita-
tive genetic research and molecular genetic research. Quantitative genetic research
attempts to estimate the magnitude or size of the contribution of genetics to behaviour
without trying to localize the particular gene or genes responsible. Quantitative ge-
netic methods include family, twin, and adoption studies. The most important among
these is probably the study of twins. Identical twins are genetically identical whereas
only half of the genes in fraternal twins, as with ordinary siblings, are identical. Thus,
if heredity affects behaviour, one would expect a greater degree of similarity in the
behaviour of identical twins than in the behaviour of fraternal twins. In other words,
one might expect the personalities of identical twins to be more similar than the per-
sonalities of normal siblings or fraternal twins.
Molecular genetics attempts to isolate the particular gene or genes associated with
a given behaviour.” Scientists employ statistics to uncover whether a particular ge-
netic marker or allele can be correlated with the presence of a particular phenotype, an
observable characteristic such as a behavioural trait or a disease that is expressed by
certain groups of individuals. For example, Alzheimer’s disease is now known to be
associated with the presence of a genetic mutation on the gene coding for the apolipo-
protein E.”
‘ Brunner et aL, supra note 3.
9 P.R. Billings, J. Beckwith & J.S. Alper, “The Genetic Analysis of Human Behavior A New Era?”
(1992) 35 Soc. Sci. Med. 227.
“R. Plomin, “Genes and Behaviour” (1993) 27 Ann. Med. 503.
“C.L. Lendon et aL, “Exploring the Etiology of Alzheimer Disease Using Molecular Genetics”
(1997) 277 J. Am. Med. Assoc. 825 at 828.
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The contribution of genetics to most behavioural traits is likely to be exceedingly
complex. Although some behavioural traits and diseases, such as Huntington’s dis-
ease, are caused by a single gene with little effect from other genes or the environ-
mental background,’ most behavioural traits appear to be influenced by many genes,
each with small effects, as well as by nongenetic environmental factors.” Thus, in
most cases, it will be incorrect to state that a gene or series of genes cause behaviour.
At best, genes contribute to or are associated with behavioural characteristics.
B. Current and Future Applications of Behavioural Genetics
The Human Genome Project, which had its formal start in 1990, is scheduled for
completion in the year 2003.” By that time, it is hoped that the sequence and location
of our estimated 100,000 genes will have been determined. Genetic researchers will
then be able to concentrate their efforts on uncovering the functioning of these genes,
that is, the way in which individual genes or gene clusters predispose people to differ-
ent behaviours. As we accumulate information concerning the location and function
of genes, remarkable advances in diagnosis and genetic manipulation will emerge.
1. Current Applications of Genetic Diagnosis
Genetic testing is already being used for a number of different purposes. One
purpose is the screening of children for genetic diseases. As is argued in this paper,
while the benefits of early diagnosis clearly outweigh the risks of harms in the case of
preventing serious, early-onset, causative illnesses, the risk-benefit ratio is less clear in
the case of susceptibility illnesses as well as late-onset illnesses for which there are no
effective interventions.
Genetic testing is also being used to assist couples in making decisions about the
termination of a pregnancy. Couples who are not religiously or ethically opposed to
abortion are using genetic testing to prevent the transmission of serious genetic dis-
eases.” For instance, it has been reported that 92% of prenatally diagnosed cases of
Down’s syndrome end in termination.” Leaving aside the ethics of abortion, there is a
real concern that both couples and genetic counselors may be blurring the distinctions
between causative and susceptibility genes by attributing more predictive power to
susceptibility testing than the data allow. If so, then many couples may be basing their
decisions to terminate a pregnancy on the mistaken belief that their unborn child car-
” Huntington’s Disease Collaborative Research Group, “A Novel Gene Containing a Trinucleotide
Repeat that is Expanded and Unstable on Huntington’s Disease Chromosomes” (1993) 72 Cell 971.
” R. Plomin, “The Role of Inheritance in Behavior” (1990) 248 Science 183; see also P. McGuffin
& N. Martin, “Science, Medicine, and the Future: Behaviour and Genes” (1999) 319 Brit. Med. . 37.
“M.D. Lemonick & D. Thompson, “Racing to Map our DNA” Tne 153:1 (11 January 1999) 28 at
30.
“J.F. Botkin, “Fetal Privacy and Confidentiality” (1995) 25:5 Hastings Cent. Rpt. 32.
6E. Alberman et aL, “Down’s Syndrome Births and Pregnancy Terminations in 1989 to 1993: Pre-
liminary Findings” (1995) 102 Brit. J. Obs. & Gyn. 445.
2000]
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533
ries a gene(s) that will cause disease when really the unborn child carries a gene(s)
that predisposes him or her to a given illness.
An alternative to selective pregnancy termination that also makes use of genetic
testing in order to prevent the transmission of genetic illnesses is preimplantation ge-
netic diagnosis (“PGD”). PGD involves the genetic screening of embryos created
from the couple’s DNA followed by the selective transfer into the woman’s uterus of
only those embryos that are diagnosed as unaffected.” Since its introduction in 1990,”
PGD has enabled couples to prevent the transmission of genetic illnesses such as cys-
tic fibrosis,” Tay-Sachs disease and sickle cell anemia.’ For the time being, however,
PGD’s clinical application is limited to a relatively small number of single gene
anomalies, X-linked disorders, and chromosomal abnormalities.’
2. Future Applications of Genetic Diagnosis
In the future, genetic testing will become powerful enough to provide couples
with probability estimates of each and every disease characteristic as well as behav-
ioural traits to which their children are genetically predisposed. Genetic “read-outs”
might include not only a list of the child’s basic personality predispositions (e.g. type-
A personality) but also a list of any behavioural illnesses (e.g. schizophrenia) and de-
viant behavioural characteristics (e.g. substance abuse) that the child is at risk of de-
veloping: “A new technology called DNA chips … will make an entire DNA blueprint
as easy to read as a supermarket bar code “‘
As the science of genetics matures, it will become possible for couples to com-
bine the predictive information provided by the child’s genetic read-out with envi-
ronmental interventions, PGD technology and genetic manipulation technology. Ge-
netic testing may one day be used to supplement environmental interventions (such as
modeling appropriate behaviours, rewarding desirable behaviours, punishing un-
wanted behaviours, etc.) in the shaping of children’s personalities by providing par-
ents with “advanced notice” of the entire gamut of behavioural traits to which their
children are genetically predisposed. For instance, parents whose child has a genetic
7 J.D.A. Delhanty & J.C. Harper, “Genetic Diagnosis Before Implantation” (1997) 315 Brit. Med.
J. 828.
” A.H. Handyside et aL, “Pregnancies from Biopsied Human Preimplantation Embryos Sexed by
Y-Specific DNA Amplification” (1990) 344 Nature 768.
” A.H. Handyside et al., “Birth of a Normal Girl After In Vitro Fertilization and Preimplantation
Diagnostic Testing for Cystic Fibrosis” (1992) 327 New Engl. J. Med. 905.
2’ WE. Gibbons et al., “Preimplantation Genetic Diagnosis for Tay-Sachs Disease: Successful
Pregnancy after Pre-embryo Biopsy and Gene Amplification by Polymerase Chain Reaction” (1995)
63 Fertil. & Steril. 723.
2 K. Xu et aL, “First Unaffected Pregnancy Using Preimplantation Genetic Diagnosis for Sickle
Cell Anemia” (1999) 281 J. Am. Med. Assoc. 1701.
‘ A.-M. Nagy et aL, “Scientific and Ethical Issues of Preimplantation Diagnosis” (1998) 30 Ann.
Med. 1.
D. Hamer & P. Copeland, Living with Our Genes (New York. Doubleday, 1998) at 303.
MCGILL LAW JOURNAL / REVUE DE DROIT DE McGILL
[Vol. 45
predisposition towards substance abuse may stand a better chance of curbing or pre-
venting the onset of such behaviour if they are provided with advanced notice of their
child’s predisposition.
Advances in PGD technology will permit couples to analyze the genetic profiles
of a large number of embryos created from their own DNA and then to select a pre-
ferred embryo for implantation. For instance, a couple choosing among ninety-six
profiles might begin by eliminating all those embryos whose genome contains chro-
mosomal abnormalities or severe genetic defects. Assuming that thirty-three embryos
are eliminated, this would reduce the pool down to sixty-three remaining embryos.
The couple might then exclude those embryos whose genome would predispose it to
physical or cognitive phenotypes that are below average as well as those embryos
whose genome would predispose it to deviant behavioural characteristics such as sub-
stance abuse or criminality. By a process of elimination, couples will be able to select
the embryo that conforms best to their expectations.
An inherent limitation to PGD technology is that the genetic constitution of the
selected embryo is constrained by the genetic makeup of the biological parents. How-
ever, advances in genetic manipulation technology will permit scientists to add genes
or gene clusters that code for specific physical or cognitive characteristics. Amaz-
ingly, scientists will not be limited to the addition of human characteristics since it
will also be possible to include certain animal characteristics. For instance, among
other things, we may one day be able to appropriate light-emitting organs from fire-
flies or fish, generators of electricity from eels and magnetic detection systems from
birds. ‘ Scientists have already managed to create mice that glow green under ultra-
violet light by transferring a foreign gene that codes for green fluorescent protein into
mice embryos.” These additions may someday enable humans to have night vision, an
extremely sophisticated sense of smell or even the ability to distinguish different radio
frequencies instead of light frequencies. Silver has observed that
[o]ver the next two centuries, the number and variety of possible genetic exten-
sions to the basic human genome will rise exponentially-like the additions to
computer operating systems that occurred during the 1980s and 90s. Exten-
sions that were once unimaginable will become indispensable… to those par-
ents who are able to afford them.’
II. Which Behaviours Have Already Been Studied?
The purpose of this section of the paper is simply to provide the reader with an
overview of some of the behaviours that have already been studied by behavioural ge-
neticists. Four categories of behaviours can be distinguished. The first category in-
Silver, supra note 2.
A.C.F. Perry et aL, “Mammalian Transgenesis by Intracytoplasmic Sperm Injection” (1999) 284
Science 1180.
Silver, supra note 2 at 280.
2000] R FLORENCIO – GENETICS, PARENTING, AND CHILDREN’S RIGHTS
535
cludes those behaviours that have conventionally been referred to as “behavioural ill-
nesses.” Within this category, scientists have already reported putative gene-
behaviour associations for, inter alia, depression,
schizophrenia,” Alzheimer’s,”
autism,”1 attention-deficit hyperactivity disorder,’ and Tourette’s syndrome.”
The second category includes those behaviours that are largely perceived as being
“deviant or non-normative characteristics”. Published reports of associations between
these behaviours and particular genetic loci have consistently led to significant pub-
licity and controversy since these behaviours are usually political in nature by virtue
of being highly susceptible to stigmatization and discrimination?’ Examples of be-
haviours falling within this second category include alcoholism, criminality,” homo-
sexuality,”‘ and substance abuse.”
” Those behaviours that have been included in the diagnostic and statistical manual of mental dis-
orders of the American Psychiatric Association. See American Psychiatric Association, Diagnostic
and Statistical Manual of Mental Disorders, DSM-IV, 4th ed. (Washington, D.C.: American Psychiat-
ric Association, 1994).
K.S. Kendler et al., “A Population-Based Twin Study of Major Depression in Women: The Im-
pact of Varying Definitions of Illness” (1992) 49 Arch. Gen. Psychiatry 257; E. Marshall, “Manic
Depression: Highs and Lows on the Research Roller Coaster” (1994) 264 Science 1693; P. McGuffin
et aL, “A Hospital-Based Twin Registry of the Heritability of DSM-IV Unipolar Depression” (1996)
53 Arch. Gen. Psychiatry 129.
L. Peltonen, “Schizophrenia: All Out for Chromosome Six” (1995) 378 Nature 665; E.S. Gershon
et aL, “Closing in on Genes for Manic-Depressive Illness and Schizophrenia” (1998) 18 Neuropsy-
chopharmacology 233.
” PH. St. George-Hyslop et aL, “The Genetic Defect Causing Familial Alzheimer’s Disease Maps
on Chromosome 21″ (1987) 235 Science 885; D. Blacker et aL, ‘ApoE4 and Age at Onset of Alz-
heimer’s Disease: The NIMH Genetics Initiative” (1997) 48 Neurology 139.
” A. Bailey et al, ‘”Autism as a Strong Genetic Disorder Evidence from a British Twin Study”
(1995) 25 Psychol. Med. 63.
” A. Thapar, A. Hervas & P. McGuffin, “Childhood Hyperactivity Scores are Highly Heritable and
Show Sibling Competition Effects: Twin Study Evidence” (1995) 25 Behav. Genet. 537; A. Thapar et
al., “Genetic Basis of Attention Deficit and Hyperactivity” (1999) 174 Brit. J. Psychiatry 105.
3 R.A. Price et al., “A Twin Study of Tourette Syndrome” (1985) 42 Arch. Gen. Psychiatry 815;
D.L. Pauls & J.F Leckman, “The Inheritance of Gilles de la Tourette’s Syndrome and Associated Be-
haviors: Evidence for Autosomal Dominant Transmission” (1986) 315 New Engl. J. Med. 993.
34M. Simm, “Violence Study Hits a Nerve in Germany” (1994) 264 Science 653; L. Goodman,
“Crime and Genetics Conference Breeds Further Controversy” (1995) 377 Nature 276; D. Butler,
“Geneticist Quits in Protest at ‘Genes and Violence’ Claim” (1995) 378 Nature 224; “Genome Re-
search Risks Abuse, Panel Warns” Editorial Comment (1995) 378 Nature 529; T. Beardsley, “Crime
and Punishment: Meeting on Genes and Behavior Gets Only Slightly Violent” Scientific American
273:6 (December 1995) 19.
” K.R. Merinkangas, “The Genetic Epidemiology of Alcoholism” Editorial (1990) 20 Psychol.
Med. 11; K.S. Kendier et al., “A Population-Based Twin Study of Alcoholism in Women” (1992) 268
J. Am. Med. Assoc. 1877; R.W. Karp, “Genetic Studies in Alcohol Research” (1994) 54 Am. J. Med.
Genet. 304; C. Holden, “New Clues to Alcoholism Risk” (1998) 280 Science 1348.
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The third category consists of cognitive characteristics such as reading disabili-
ties”‘ and intelligence,’ characteristics that cannot be properly classified as behaviours
per se. The final category of behaviours that are currently being studied by scientists
includes those behaviours that might be termed “basic personality predispositions”.”
For instance, scientists are trying to ascertain the genetic loci of personality traits such
as impulsivity, shyness, self-esteem, social attitudes, and novelty seeking. 2 Even stut-
tering has received the attention of behavioural geneticists. 3
Ill. Risks Associated With Behavioural Genetic Testing
A. The Risk of Neurogenetic Determinism
What does it mean to say that someone is genetically predisposed to expressing
certain types of behaviour? Will all carriers of the predisposition necessarily exhibit
the behaviour? Predisposition testing cannot accurately predict when, where, or even
if a behavioural characteristic will find expression: “Even if there were a correlation
between, say, a single-gene defect and a predisposition to impulsivity, no amount of
M. Bohman et aL, “Predisposition to Petty Criminality in Swedish Adoptees” (1982) 41 Arch.
Gen. Psychiatry 1233; S.A. Mednick, W.F. Gabrielli Jr. & B. Hutchings, “Genetic Influences in
Criminal Convictions: Evidence from an Adoption Cohort” (1984) 224 Science 891.
” J.M. Bailey et aL, “Heritable Factors Influence Sexual Orientation in Women” (1993) 50 Arch.
Gen. Psychiatry 217; D.H. Hamer et a!., “A Linkage Between DNA Markers on the X Chromosome
and Male Sexual Orientation” (1993) 261 Science 321; S. LeVay & D.H. Hamer, “Evidence for a
Biological Influence in Male Homosexuality” Scientific American 270:5 (May 1994) 44.
” RJ. Cadoret et aL, “An Adoption Study of Genetic and Environmental Factors in Drug Abuse”
(1986) 43 Arch. Gen. Psychiatry 1131; R.W. Pickens et aL, “Heterogeneity in the Inheritance of Al-
coholism” (1991) 48 Arch. Gen. Psychiatry 19; G.R. Uhl, A.M. Persico & S.S. Smith, “Current Ex-
citement With D, Dopamine Receptor Gene Alleles
(1992) 49
Arch. Gen. Psychiatry 157; H.W. Gordon, “Human Neuroscience at National Institute on Drug
Abuse: Implications for Genetic Research” (1994) 54 Am. J. Med. Genet. 300.
in Substance Abuse”
” L.R. Cardon et aL, “Quantitative Trait Locus for Reading Disability on Chromosome 6″ (1994)
266 Science 276.
” T.L Bouchard Jr. & M. McGue, “Familial Studies of Intelligence: A Review” (1981) 212 Science
1055; TJ. Bouchard Jr. et aL, “Sources of Human Psychological Differences: The Minnesota Study of
Twins Reared Apart” (1990) 250 Science 223; R. Plomin et aL, “DNA Markers Associated with High
Versus Low IQ: The IQ Quantitative Trait Loci (QTL) Project” (1994) 24 Behav. Genet. 107.
” This category includes behaviours such as altruism, empathy, optimism, and neuroticism that are
normally studied by personality or social psychologists.
” C.R. Cloninger, R. Adolfsson & N.M. Svrakic, “Mapping Genes for Human Personality” (1996)
12 Nat. Genet. 3; J. Benjamin et aL, “Population and Familial Association between the D4 Dopamine
Receptor Gene and Measures of Novelty Seeking” (1996) 12 Nat. Genet. 81; RP. Ebstein et al, “Do-
pamine D4 Receptor (D4DR) Exon I Polymorphism Associated with the Human Personality Trait
of Novelty Seeking’ (1996) 12 Nat. Genet. 78.
” G. Andrews et aL, “Genetic Factors in Stuttering Confirmed (1991) 48 Arch. Gen. Psychiatry
1034; C.D. Mellon, F Umar & M.L. Hanson, “Stuttering as a Phenotype for Behavioral Genetics Re-
search” (1993) 48 Am. J. Med. Genet. 179.
2000] P FLORENCIO – GENETICS, PARENTING, AND CHILDREN’S RIGHTS
537
behavioural genetics could predict whether such a predisposition will gain expression
in a bar room-or a board room-fight.” Moreover, many individuals possessing
genes that predispose them to certain forms of behaviour may never express those be-
haviours, while many other individuals not possessing the predisposing genes may
habitually express the behaviours.
The reason for all this uncertainty is of course that genetics is only one factor
amongst many that contributes to behaviour. Non-genetic factors, such as the envi-
ronment, are also significant contributors to the expression and development of be-
haviour characteristics. ‘ According to Dean Hamer of the National Cancer Institute in
the U.S., “complex behavioural traits … are the product of multiple genetic and envi-
ronmental antecedents, with ‘environment’ meaning not only the social environment
but also such factors as the ‘flux of hormones during development, whether you were
lying on your right or left side in the womb, and a whole parade of other things.”” The
interaction between genes and environment is so complex that “[g]enes might have a
somewhat different effect on someone in Salt Lake City than if that person were
growing up in New York City.”
The potential for misinterpretation and misapplication of behavioural genetic re-
search has been said to constitute one of the significant risks associated with the ge-
netics movement. Some commentators have voiced their concern that society will be-
gin to believe in the existence of a direct and causal relationship between genetics and
behaviour. Consequently, whereas non-genetically influenced behaviour will be seen
as malleable and the product of free will, genetically influenced behaviour will be
misinterpreted as being unmalleable and beyond the control of the affected individual.
This belief has been referred to as “neurogenetic determinism’ or “genetic fatal-
ism”.
If behaviour is a consequence of genetics rather than the result of free choice,
then should individuals be held less accountable, legally and morally, for behaviour
that is genetically influenced than for behaviour that is non-genetically influenced?
For instance, if it is recognized that some forms of alcoholism are genetic and others
are environmental, “there may be a tendency on the part of society and of people with
E. Parens, ‘Taking Behavioral Genetics Seriously” (1996) 26:4 Hastings Cent. Rpt. 13 at 14.
“Because genetic variance rarely accounts for more than 50% of the variance of behavioural traits,
Robert Plomin has stated that one of the most important conclusions from behavioural genetic re-
search is the significance of environmental influences on behaviour. See R. Plomin, Nature and Nur-
ture: An Introduction to Human Behavioral Genetics (Pacific Grove, Cal.: Brooks/Cole Publishing,
1990).
“Mann, supra note 4 at 1687.
“Ibid.
4” S. Rose, “The Rise of Neurogenetic Determinism” (1995) 373 Nature 380; S.P.R. Rose, Lifelines:
Biology, Freedom, Determinism (Harmondsworth, U.K.: Allen Lane, 1997); S.P.R. Rose, “Neuroge-
netic Determinism and the New Euphenics” (1998) 317 Brit. Med. J. 1707.
49 J.S. Alper & J. Beckwith, “Genetic Fatalism and Social Policy: The Implications of Behavior Ge-
netics Research” (1993) 66 Yale J. Biol. Med. 511.
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alcoholism themselves to blame those who have the environmentally induced form of
alcoholism. According to this view, people with the environmentally induced form,
unlike those with the genetic form, should have much more control over their behav-
iour.” It is this type of reasoning that motivated criminal defense attorneys to attempt
to use the results of the MAOA deficiency study to exculpate their clients on death
row. That is, the death row convicts should either not be held responsible for their ac-
tions or should at least receive significantly reduced sentences given that they are
themselves victims of a genetic predisposition towards violence and aggression.
B. The Risk of Genetic Discrimination
Genetic discrimination is one of the most salient dangers associated with genetic
testing. Health and life insurance companies as well as employers have normally been
Individuals who undergo
the protagonists in discussions of genetic discrimination’
genetic testing and test positive for a predisposition to a physiological or behavioural
disorder could be subjected to insurance discrimination such as the denial of insur-
ance or exaggerated premiums. Employment discrimination includes unfavourable
treatment in hiring, promotion, assignment of duties, discharge and compensation.
Evidence of genetic discrimination already exists in the literature.’ For instance, the
U.S. Air Force used to restrict carriers of sickle-cell anemia from becoming pilots on
the belief that carriers, each of whom have only one copy of the sickling gene, would
encounter difficulties resulting from decreased oxygen levels at high altitudes. This
has led some commentators to recommend a moratorium on the use of genetic testing
by insurance companies’
Importantly, genetic discrimination on the basis of susceptibility to a behavioural
disorder is as likely as genetic discrimination on the basis of susceptibility to a
physiological disorder. To name but one example, given that drunk driving is one of
the most significant factors leading to car accidents, automobile insurance companies
I Ibid.
“See generally J.S. Alper & M.R. Natowicz, “Genetic Discrimination and the Public Entities and
Public Accommodations ‘litles of the Americans with Disabilities Act’ (1993) 53 Am. J. Hum.
Genet. 26; H. Ostrer et al., “Insurance and Genetic Testing: Where are We Now? (1993) 52 Am. J.
Hum. Genet. 565; M.R. Natowicz, J.K. Alper & J.S. Alper, “Genetic Discrimination and the Law”
(1992) 50 Am. J. Hum. Genet. 465; P.R. Billings et a!., “Discrimination as a Consequence of Genetic
Testing” (1992) 50 Am. J. Hum. Genet. 476.
” Billings et aL, ibid. at 477-78; J.E. Bowman, “Prenatal Screening for Hemoglobinopathies”
(1991) 48 Am. J. Hum. Genet. 433 at 433; see also E.V. Lapham, C. Kozma & J.O. Weiss, “Genetic
Discrimination: Perspectives of Consumers” (1996) 274 Science 621.
” L. Uzych, “Genetic Testing and Exclusionary Practices in the Workplace” (1986) 7 J. Pub. Health
Pol’y 37 at 50.
‘ P.S. Harper, “Genetic Testing and Insurance” (1992) 26 J. Royal College Phys. Lond. 184 at 187;
P.S. Harper, “Insurance and Genetic Testing” (1993) 341 Lancet 224; F. Gammie, “Genetic Test Re-
port Urges Moratorium on Disclosure” (1993) 366 Nature 498.
2000] R FLORENCIO – GENETICS, PARENTING, AND CHILDREN’S RIGHTS
539
may be tempted to either deny insurance or charge exaggerated premiums to indi-
viduals carrying a gene(s) predisposing them to alcoholism.
Many observers, including Jonathan Beckwith, a geneticist at Harvard University,
have noted that the threat of genetic discrimination and stigmatization will likely ex-
tend well beyond the realm of insurance and employment. Mann has observed,
“[O]ne wonders why it should be assumed the process [of stigmatization] will stop
with insurance companies”.’ Indeed, social stigmatization on the basis of genetics
could become as prevalent as economic stigmatization. For instance, Princeton Uni-
versity biologist Lee Silver has hypothesized that advances in genetic research may
eventually lead to a divided society, the “gen-rich” and the “gen-poor”, those with and
without engineered genomes.” Although it is impossible to foresee with precision
how genetic labeling will impact future social structures, genetic elitism and new
forms of social hierarchies reminiscent of the novel Gattaca, as well as mating and
reproductive decision-making on the basis of genetics may not be unlikely possibilities.
Critics of behavioural genetics predict that genetic racism will be the most preva-
lent form of racism in the twenty-first century; genetic makeup will replace skin col-
our as the new basis for holding prejudicial beliefs and attitudes. Peter Breggin, a psy-
chiatrist at the Center for the Study of Psychiatry in Bethesda, Maryland has noted
that “[b]ehavioral genetics is the same old stuff in new clothes, … [i]t’s another way
for a violent, racist society to say people’s problems are their own fault, because they
carry ‘bad’ genes”‘ For instance, individuals carrying “bad genes” predisposing them
to schizophrenia may find that adoption agencies are rejecting their applications on
the assumption that they are unfit for parenthood. Individuals carrying “bad genes”
predisposing them to reading disabilities or reduced cognitive abilities may be denied
entrance to private high schools or colleges.
C. Impact of Testing on the Child and on Intrafamilial Relationships
Another disadvantage to genetic testing is that unfavourable results may disrupt
intrafamilial relationships and damage the self-esteem of children whose genetic
makeup is not up to par. Research has shown that children who test positive for a pre-
disposition to a behavioural illness may suffer a loss of self-esteem, may be overin-
dulged, rejected or treated as a scapegoat by family,” and “[i]f a child’s genetic infor-
Mann, supra note 4 at 1689.
Silver, supra note 2.
‘7Mann, supra note 4 at 1686.
See American Society of Human Genetics Board of Directors and The American College of
Medical Genetics Board of Directors, “Points to Consider Ethical, Legal, and Psychosocial Implica-
tions of Genetic Testing in Children and Adolescents” (1995) 57 Am. J. Hum. Genet. 1233 [herein-
after “Points to Consider”]. See also E.C. Perin & PS. Gerrity, “There’s a Demon in Your Belly:
Children’s Understanding of Illness” (1981) 67 Pedia. 841; J.H. Fanos & J.P. Johnson, “Barriers to
Carrier Testing for CF Siblings” (1993) 53 (suppl.) Am. J. Hum. Genet. 51; N.S. Wexler, “Genetic
Jeopardy and the New Clairvoyance” (1985) 6 Prog. Med. Genet. 277; S. Kessler, “Invited Essay on
MCGILL LAW JOURNAL/REVUE DE DROITDE MCGILL
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mation is disclosed outside the family, the ensuing loss of privacy may exacerbate
poor self-esteem” and lead to significant psychological trauma.
Parents may not always be aware of the potentially adverse psychosocial effects
that testing can have on the child’s own cognition as well as on parent-child and sib-
ling-sibling bonds: “In requesting testing, parents usually envisage the benefits of a
negative test result: reduction in anxiety for themselves and the child and ability to
make firm plans for the future. They are less likely to be aware of the potential harms
of a positive test result.:” For instance, homophobic parents might request testing to
determine whether their child carries the gene(s) predisposing him or her to homo-
sexuality. They may feel confident that testing is in the best interests of their child and
family. They may reason that a negative test result would reduce anxiety for them-
selves and a positive result would provide them with sufficient advanced notice to
prevent the onset of homosexual behaviour which would, in their view, be in the
child’s best interests. It is easy to see how testing may not be in the child’s best inter-
ests. A positive test could lead to withdrawal of affection, overprotection or rejection
by the parents, stigmatization by siblings and could lead to anxiety, depression, and
guilt in the child.
D. Biological Parenting
As genetic testing and genetic manipulation become increasingly refined, science
may be able to significantly alter cognitive as well as basic personality predisposi-
tions. Advances in prenatal genetic engineering may permit parents to pre-select and
control, to the greatest extent possible, the biological component of their children’s
personalities. The term “biological parenting” refers to the use of advances in genetic
technology by parents to shape the personalities and cognitive abilities of their chil-
dren. For instance, ambitious parents may wish to request prenatal genetic manipula-
tion to ensure that the latter are genetically predisposed to developing type-A person-
alities as well as above average intelligence. A 1994 Gallup public opinion poll found
that 11% of those surveyed would make use of genetic manipulation to enhance the
intelligence of their children if this technology were available.” This represents a 6%
increase since 1993.
the Psychological Aspects of Genetic Counseling. V. Preselection: A Family Coping Strategy in
Huntington Disease” (1988) 31 Am. J. Med. Genet. 617. However, others have pointed out that insuf-
ficient attention has been paid to the potential harm that may be caused by withholding testing. See
N.F. Sharpe, Letter to the Editor, “Presymptomatic Testing for Huntington Disease: Is there a Duty to
Test those Under the Age of Eighteen Years?” (1993) 46 Am. J. Med. Genet. 250.
cides?” (1994) 272 J. Am. Med. Assoc. 875 at 878.
‘ “Points to Consider”, ibid. at 1236.
W D.C. Wertz, J.H. Fanos & P.R. Reilly, “Genetic Testing for Children and Adolescents: Who De-
61 T. Marteau et aL, “Public Attitudes Towards the Selection of Desirable Characteristics in Chil-
dren” (1995) 32 J. Med. Genet. 796 at 796. In addition, 5% of those polled would make use of genetic
technology to predispose their children to “good looks”, 18% of those polled would make use of ge-
netic technology to eliminate any genetic predispositions toward “aggression” and/or “alcoholism”,
2000] R FLORENCIO – GENETICS, PARENTING, AND CHILDREN’S RIGHTS
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Given that parents have the right to use environmental interventions to shape the
personalities of their children, such as offering rewards for desirable behaviours and
punishing undesirable behaviours, should parents also have the right to use biological
interventions? Although there are undoubtedly many religious and ethical arguments
that might be made against this proposition, a comprehensive analysis of this issue
will depend on the scientific danger of tampering with groups of interacting genes, a
danger which is not yet fully understood. Although the objective might be to influ-
ence a behavioural predisposition, genetic manipulation-including the removal or
addition of gene(s) and gene clusters-might lead to significant metabolic, biochemi-
cal, structural, or other side effects that are not yet imaginable. Until the risks of sig-
nificant genetic tampering are better understood, primum non nocere should be our
guiding principle.
IV. Suggested Guidelines
Given the immediate and cumulative risks-individual, familial, and societal-
associated with genetic testing, as well as with other genetic interventions such as ge-
netic engineering, parental access to their children’s biobehavioural information
should be premised on whether testing offers immediate therapeutic benefits to the
child. In the absence of clear therapeutic benefits, it is suggested that for the time be-
ing, parental requests for genetic testing ought to be denied.’ The “therapeutic-
benefit’ test has already been explicitly recommended as a prerequisite to genetic
testing in the case of physical illnesses’ and implicitly recommended in the case of
behavioural illnesses.” As a general rule, the therapeutic-benefit test is comprised of
two components. First, testing can be said to offer children immediate therapeutic
benefits when preventative or early treatment interventions are available in the event
of a positive test result and, second, when it accomplishes more good than harm. For
instance, genetic testing for phenylketonuria offers newborns immediate therapeutic
and 10% of those polled would make use of genetic technology to eliminate any genetic predisposi-
tions toward “homosexuality”.
One exception to this rule, which is reviewed below, is the case of monogenic behaviours posing
immediate and serious risks or harms to the child. Even where no therapeutic intervention is available,
testing may be justified
6′ Clinical Genetics Society (U.K.), “The Genetic Testing of Children” (1993) 31 J. Med. Genet.
785; L.B. Andrews et aL, eds., Assessing Genetic Risky: Implications for Health and Social Policy
(Washington, D.C.: National Academy Press, 1994); “Points to Consider”, supra note 58; P.S. Harper
& A. Clarke, “Should We Test Children for ‘Adult’ Genetic Diseases?” (1990) 335 Lancet 1205.
6, For instance, the International Huntington Association and the World Federation of Neurology
have issued a policy statement recommending that genetic testing for Huntington’s disease, a late-
onset adult behavioural disorder for which there is currently no prevention or early treatment avail-
able, not be offered to parents. See International Huntington Association and the World Federation of
Neurology Research Group on Huntington’s Chorea, “Guidelines for the Molecular Genetics Predic-
tive Test in Huntington’s Disease” (1994) 31 J. Med. Genet. 555 [hereinafter “Predictive Test in
Huntington’s Disease”].
MCGILL LAW JOURNAL / REVUE DE DROIT DE MCGILL
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benefits given that subsequent dietary treatment can prevent them from developing
mental retardation.
Although testing clearly leads to immediate therapeutic benefits for children in
the case of phenylketonuria, the determination as to whether testing is therapeutically
beneficial in other cases will undoubtedly become an area of uncertainty as increasing
numbers of behaviours become susceptible to genetic testing. Fortunately, two criteria
may be used to offer guidance during the intricate assessment of whether the benefits
associated with a particular genetic test outweigh the risks of harm: 1) whether the
behaviour is monogenic or polygenic, and 2) the immediacy and severity of the risks
or harms that the behaviour poses to the child.
These criteria are valuable in that they provide a useful framework through which
to examine the full range of human behaviours and in that they give content to the
second component of the therapeutic-benefit test, namely the necessity of having a
positive benefit-to-risk ratio. Moreover, the first component of the therapeutic-benefit
test, the existence and availability of a definitive therapeutic intervention, is also ame-
nable to being considered within the context of this framework.
Before proceeding with my analysis, it is important to mention two final points.
First, the therapeutic-benefit test is meant to apply as a rule of general application.
While the rule is relatively comprehensive certain exceptions are likely to apply. For
instance, where the test cannot be characterized as being therapeutically beneficial to
the child yet the risks associated with testing are judged to be de minimis, then coun-
tervailing interests such as the possible benefits of testing to the family unit may be
factored into the decision-making equation.” Second, given the inherent complexity
of genetic information and technology along with its exponential growth rate, the
conclusions that are drawn in the following analysis are, to use the words of Willard
Gaylin, “tentative, of a time, and receptive to immediate modification and constant re-
examination.”
A. Monogenic Behaviours Posing Immediate and Serious Risks to
the Child
Although most genetic effects on behaviour are likely to be polygenic and prob-
abilistic, others are already known to be monogenic and deterministic. Single-gene
behaviours such as Tay-Sachs disease and Lesch-Nyhan Syndrome will “have their
Laberge & Knoppers, supra note 7.
This is consistent with the suggestion that parents have the power to consent to research offering
no benefit to the child provided that it involves no more than a minimal risk of harm. See MA.
Somerville, Consent to Medical Care (Ottawa: Law Reform Commission of Canada, 1979) at 75-83
[hereinafter Consent to Medical Care].
67 W. Gaylin, ‘Who Speaks for the Child?” in W. Gaylin & R. Macklin, eds., Who Speaks for the
Child: The Problems of Proxy Consent (New York: Plenum, 1982) 3 at 26.
2000] R FLORENCIO – GENETICS, PARENTING, AND CHILDREN’S RIGHTS
543
effects regardless of the environment or the genetic background of the individual”
In
circumstances where a behaviour is both monogenic and poses immediate and signifi-
cant risks or harms to the child, genetic testing will normally be justified. Parents
should have the right to know when their child will definitely (deterministic) develop a
serious disorder, especially when a definitive therapeutic intervention is available.
Lesch-Nyhan Syndrome is an example of a serious monogenic disorder that re-
sults in unusual motor development, mental retardation, and extreme self-mutilation. ‘
Children suffering from the disorder compulsively and repetitively bite their lips,
tongue and fingers. This behavioural disorder is so severe that children normally die
before reaching adulthood. If a definitive therapeutic intervention were available,
whether this be genetic manipulation or some form of medication, prenatal or early
postnatal testing would clearly be justified. What is less clear is whether testing
should be allowed when no subsequent therapeutic intervention is available. Never-
theless, the argument could be made that the certainty, immediacy, and severity asso-
ciated with such behaviours provide the moral justifications for permitting parents to
have access to testing, notwithstanding the absence of some form of preventative or
early treatment intervention.
B. Monogenic Behaviours Whose Risks are Either Not Immediate or
Not Serious
Where a single gene behaviour either does not pose serious risks to the child, such
as in the case of basic personality traits,’ or does not pose immediate risks to the
child, such as in the case of late onset behavioural predispositions, testing will nor-
mally not be justified. The availability of a definitive therapeutic intervention is not
relevant to this analysis given that no intervention is necessary in the case of basic
personality traits and that in the case of late-onset behavioural predispositions the
treatment only becomes relevant at or around the time of the behaviour’s expression.
The only exception to this rule is where a medical or dietary intervention in childhood
can prevent the late onset behaviour from ever expressing itself.
Generally then, testing within this category of behaviours is to be considered non-
therapeutic given that there would be no immediate therapeutic benefit to the child.
Moreover, such testing would probably not even be considered therapy and would be
better classified as research given that the possible side effects associated with this
unnecessary testing are unknown’ The burden of proof should be on parents to show
” R. Plomin, “Environment and Genes: Determinants of Behavior” (1989) 44 Am. Psychol. 105 at
110.
‘ J.D. Rainer, “Genetics and Psychiatry” in H.I. Kaplan & BJ. Sadock, eds., Comprehensive Text-
book of Psychiatry, vol. 1, 4th ed. (Baltimore: Williams & Wflins, 1985).
70 Basic personality traits are generally considered to be polygenic.
7 See generally M.A. Somerville, “Therapeutic and Non-Therapeutic Medical Procedures-What
are the Distinctions?” (1981) 2 Health L. Can. 85; MA. Somerville, “Structuring the Issues in In-
formed Consent” (1981) 26 McGill L.L 740.
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why this form of genetic testing, which constitutes a non-therapeutic research inter-
vention, should be performed on their child.
C. Polygenic Behavioural Predispositions Posing Significant Risks
or Harms to the Child
The most significant difference between polygenic and monogenic behaviours is
that the certainty associated with causative, single gene behaviours is absent in the case
of polygenic behaviours. The probabilistic and uncertain nature of polygenic behaviours
should have the effect of increasing the threshold of justification that parents would need
to provide in order to have access to their child’s biobehavioural information.
In the case of behavioural illnesses, so long as the potential benefits outweigh the
risks, the availability of a preventative therapeutic intervention will normally justify
genetic testing. For instance, if genetic manipulation were available to cure schizo-
phrenia, then according to the therapeutic benefit rule there would be sufficient ethical
justification for testing. However, in the absence of an immediately available preven-
tative intervention testing should probably be denied. In addition to the fact that test-
ing would offer the child few benefits, there is no certainty that the child will ever de-
velop and express the at-risk behavioural illness., Therefore, the risks associated with
testing would outweigh the benefits.
In the case of behaviours such as alcoholism or homosexuality that are often per-
ceived as being either deviant or non-normative, great caution must be exercised in
determining whether testing would be therapeutic. No broad-band characterization is
possible for these behaviours. Instead, each one must be assessed individually. Taking
the example of homosexuality, it is highly probable that the harms associated with
testing would.outweigh the benefits, if any. How should the possibility of being able
to prevent homosexuality through genetic manipulation be dealt with? Should indi-
viduals have the right not to have their genomes tampered with by others-that is, to
have their life determined by the genetic lottery in cases other than the prevention of
serious diseases? Or, alternatively, should parents have the right to guarantee that their
child will not be predisposed to becoming homosexual? If one answers yes to this
latter question, then this sends the message that homosexuality is somehow abnormal,
which will only serve to increase stigmatization and discrimination. If one answers
no, then this removes the ability of parents to ensure that their child will not be bio-
logically predisposed to becoming homosexual. The final decision regarding this issue
will have much more to do with society’s perception of normality than it will with
therapeutic benefit.
” As the probability estimate of developing the behaviour approaches one hundred percent, the be-
haviour begins to resemble a monogenic behaviour thereby serving as a stronger justification for
testing.
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545
D. Polygenic Behavioural Predispositions That do Not Pose
Significant Risks or Harms to the Child
Testing should generally be denied for the largest category of polygenic behav-
iours, our basic personality traits. Once again, the availability of a definitive therapeu-
tic intervention will not be relevant to the analysis of this category of behaviours.
Testing for the purposes of non-therapeutic research interventions, such as biological
parenting (genetic manipulation), should be strictly forbidden where there is a risk of
grave and permanent consequences. Should parents be denied access when they re-
quest testing out of simple curiosity when there is no intent to subsequently tamper
with child’s genome? The answer will likely depend on whether the perceived and
actual benefits associated with providing parents with advanced notice of their child’s
basic personality predispositions outweigh the perceived and actual risks of harms.
V. Limiting Parental Access to Genetic Information
A. Locus of Parental Authority and Access to Genetic Information
For centuries parents or primary care givers have been responsible for raising,
protecting, educating, and caring for their children. The special parent-child relation-
ship that is created through these parental responsibilities or incidents of guardianship
as well as the theory that parents are their children’s most conscientious advocates and
have their children’s best interests at heart form the basis of the right of parents to
make health-care decisions for their children. Other scholars have justified parental
decision-making authority on the importance of preserving “intimate family relation-
ships”.’ Either way, the authority of parents to reject or consent to medical interven-
tions on behalf of their children is well entrenched in our common law.” Under the
common law, interference with parental health-care decision-making authority, how-
ever beneficially intended, can give rise to a cause of action. For instance, treatment of
” L.M. Kopelman, ‘The Best-Interest Standard as Threshold, Ideal, and Standard of Reasonable-
ness” (1997) 22 J. Med. Phil. 271; R.R. Faden, N.A. Holtzman & A.J. Chwalow, “Parental Rights,
Child Welfare, and Public Health: The Case of PKU Screening” (1982) 72 Am. J. Public Health
1396.
74 J. Goldstein, ‘Medical Care for the Child at Risk: On State Supervention of Parental Autonomy”
(1977) 86 Yale LJ. 645; R.S. Downie & R Randall, “Parenting and the Best Interests of Minors”
(1997) 22 J. of Med. Phil. 219. See also Ney v. Canada (Attorney General) (1993), 79 B.C.L.RI
(2d)
47 at 55, 102 D.L.R. (4th) 136 (S.C.) [emphasis added, hereinafter Ney cited to B.C.L.R.] where Jus-
tice Huddart noted that “[i]f health care is to be in a child’s best interests, health care providers will
need to be sensitive to and respect the culture and particularly the belief systems of the family of
which the child continues to be a member, and certainly, all health care providers must be aware of
the importance offamily relationships to the emotional physica, and spiritual well-being of their pa-
tient”.
75 B. (R.) v. Children’s Aid Society of Metropolitan Toronto, [1995] 1 S.CIL 315, 122 D.L.R. (4th) 1
[hereinafter Children’s Aid Society cited to S.C.R.]; Ney, ibid.; Consent to Medical Care, supra note
66; B.M. Dickens, Medico-LegalAspects of Family Law (Toronto: Butterworths, 1979) at 93-100.
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a minor without parental consent, even non-negligent treatment, can give rise to an
action for assault and battery by the parent.2 The requirement of prior parental con-
sent will only be exempted in limited circumstances such as in the case of emanci-
pated minors, emergencies, or where there is statutory provision allowing functionally
competent minors to provide consent to medical interventions.” Recently, our highest
court, by a narrow majority, recognized that s. 7 of the Canadian Charter of Rights
and Freedoms protects the right of parents to make decisions of fundamental impor-
tance for their children, including health-care decisions.”
Parental health-care decision-making authority, however, is by no means absolute.
For instance, although adults are fully entitled to refuse life-saving interventions on
their own behalf, it is not at all obvious that they have the right to make such refusals
on behalf of their children.” As will be reviewed below, courts have often exercised
their parens patriae jurisdiction to limit the ability of parents to refuse “necessary
medical interventions” on behalf of their children.’ Of greater relevance to the issue
of non-therapeutic genetic testing, parental authority has also been restricted in cir-
cumstances where parents request “inappropriate treatmenf’ on behalf of their chil-
dren.”
The general recommendation of this paper is that parents be denied access to non-
therapeutic genetic information. In what way, if any, does this recommendation inter-
fere with the decision-making authority of parents over their children, including
health-care authority? In answering this question, it is perhaps wisest to begin by re-
calling what the therapeutic-benefit test permits before proceeding with an analysis as
to what it excludes. Under the therapeutic-benefit test, parents would have access to
all genetic tests offering therapeutic benefits to their child. The locus of authority–to
reject or consent to therapeutic genetic testing-would remain with parents. What the
therapeutic-benefit test would exclude is the ability of parents to consent to or demand
non-therapeutic testing on behalf of their child. This limitation of parental authority is
not, however, inconsistent with the current state of the law since parental authority
“applies only to therapeutic treatment. They [parents] have no power to consent to
” E.I. Picard & G.B. Robertson, Legal Liability of Doctors and Hospitals in Canada, 3d ed. (Scar-
borough: Carswell, 1996) at 75, 107; B. Sneiderman, J.C. Irvine & P.H. Osborne, Canadian Medical
Law: An Introduction for Physicians, Nurses and other Health Care Professionals, 2d ed. (Scarbor-
ough: Carswell, 1995) at 40.
“Marshall v. Curry (1933), 3 D.L.R. 260,60 C.C.C. 136 (N.S.S.C. (T.D.)); Reibl v. Hughes, [1980]
2 S.C.R. 880, 114 D.L.R. (3d) 1. See also A.R. Holder, “Disclosure and Consent Problems in Pediat-
rics” (1988) 16 L. Med. & Health Care 219.
“Children’s Aid Society, supra note 75.
Malette v. Shulman (1990), 72 O.R. (2d) 417,67 D.L.R. (4th) 321 (C.A.); Fleming v. Reid (1991),
4 O.R. (3d) 74, 82 D.L.R. (4th) 298 (C.A.); Region 2 Hospital Corp. v. Walker (1994), 150 N.B.R.
(2d) 366, 116 D.L.R. (4th) 477 (C.A.) [hereinafter Walker cited to N.B.R.].
” See below, Part V.B.2, “Best-Interests Analysis”
at Ibid.
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non-therapeutic treatment for their child:’ = In short, the therapeutic-benefit test, by
authorizing access to therapeutic testing while excluding the possibility of non-
therapeutic testing, neither adds nor takes away from the authority currently enjoyed
by parents under the law. Instead, it merely maintains a juridical status quo.
Although my premise is that the law does not permit parents to insist on medical
interventions that are non-therapeutic to the child, the possibility that parents may
seek to assert such a right by distinguishing behavioural testing from other forms of
medical testing and interventions makes it important to review the justifications that
might be given for denying access to non-therapeutic behavioural testing.’
B. Legal and Ethical Justifications for Denying Access to Non-
Therapeutic Testing
1. Non-Maleficence and “Primum Non Nocere”
Non-maleficence or non nocere (do no harm) has been distinguished in biomedi-
cal ethics from primum non nocere (first, or above all, do no harm).” The latter prin-
ciple has been criticized as making little sense in the modem era of scientific thera-
peutics.’ The problem with primum non nocere is that it gives moral precedence to
non-maleficence over beneficence thereby leading to therapeutic nihilism. That is,
notwithstanding the important and potentially life-saving benefits associated with
treatment, physicians would be morally prohibited from intervening whenever there
was a risk of harming their patients.
The better view is that beneficence and non-maleficence have to be balanced or
weighed against one another: “Harm may be necessary to achieve benefit, risk of
harm to achieve probability of benefit.: For instance, a schizophrenic patient may
have to endure the side effects of antipsychotic medication such as tardive dyskinesia
if he or she wishes to remain lucid and unhospitalized. Therefore, where medical in-
terventions offer therapeutic benefits to patients, a benefit-risk analysis will be re-
quired and a strict application ofprimum non nocere will make little sense.
‘2M.L. McCall & G.B. Robertson, ‘Legal Rights of Children to Health Care in the Common Law
Jurisdictions of Canada” in B.M. Knoppers, ed., Canadian Child Health Law: Health Rights and
Risks of Children (Toronto: Thompson Educational, 1992) 151 at 167. See also Picard & Robertson,
supra note 76 at 91; E. (Mrs.) v. Eve, [1986] 2 S.C.R. 388 at 434, 31 D.L.R. (4th) 1 [hereinafter E.
(Mrs.) cited to S.C.R.].
” Unless the risk of harm to the child associated with the non-therapeutic intervention is trifling in
which case the maxim de minimis non curat lex would apply. See Consent to Medical Care, supra
note 66.
” R. Gilon, “‘Primum Non Nocere’ and the Principle of Non-maleficence” (1985) 291 Brit. Med. J.
130.
, R.W. Gifford, “Primum Non Nocere” (1977) 238 J. Am. Med. Assoc. 589.
Gillon, supra note 84 at 131.
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[
Where a medical intervention offers no therapeutic benefits to the patient, how-
ever, such as in the case of non-therapeutic genetic testing, primum non nocere makes
perfect sense: “Primum non nocere is saying to us that if a treatment is unlikely to
make much difference … then to risk doing serious harm is hard to justify” In fact, in
the case of non-therapeutic interventions, there is little difference between primum
non nocere and non-maleficence. A benefit-risk analysis is not required since the in-
tervention is either neutral, offering neither benefits nor harms, or the intervention is
associated only with the risk of harm. In either case, both primum non nocere and
non-maleficence provide appropriate moral and legal justifications for prohibiting
physicians from providing non-therapeutic genetic testing and, on the other side of the
coin, for denying parents a right of access to this information in the first place.
2. Best-Interests Analysis
Another justification for denying parents a right to demand non-therapeutic ge-
netic testing is that it would be contrary to the best interests of their child. Courts have
generally relied on best interests analyses when trying to ascertain whether question-
able parental decisions are based on the personal desires of the parents or on an ob-
jective analysis of the best interests of the child.” In circumstances where the child’s
best interests were not objectively discernible to the court, parental choice has gener-
ally been complied with. For example, where two standard medical interventions are
available, one being recommended by the attending physician or the State and the
other by the parents, and both interventions are equally fraught with potential risks
and complications, courts will usually respect parental choice.”
However, where the medical intervention recommended by the attending physi-
cian or the state is clearly in the best interests of the child by virtue of being clinically
superior to the alternatives or where the parents are recommending passive non-
action, courts have overridden parental choice and ordered that the life-saving inter-
vention be performed. Two instances where courts have limited parental health-care
decision making authority is where parents refuse “necessary medical interventions”
on behalf of their children or where they request “inappropriate” or “non-therapeutic”
treatment for their children.
One of the most common situations in which courts will restrict the ability of par-
ents to refuse necessary treatment is where Jehovah’s Witness parents refuse a blood
transfusion on behalf of their child. In most cases, courts have determined that the
blood transfusion would be in the child’s best interests and have overridden the par-
T. Brewin, “Primum Non Nocere?” (1994) 344 Lancet 1487 at 1488.
The parens patriae jurisdiction of courts empowers them to step into the shoes of the parents to
make orders that would be in the best interest of the child.
“Re K. (LD.) (1985), 48 R.EL. (2d) 164, 23 C.RR. 337 (Ont. Prov. Ct. (Fam. Div.)); Saskatche-
ivan (Minister of Social Services) v. P(E) (1990), 69 D.L.R. (4th) 134, [1990] 4 W.W.R. 748 (Sask.
Prov. CL).
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549
ent’s refusal to consent.” Other examples include parents’ refusal to consent to stan-
dard antibiotic care to treat bacterial meningitis “‘ or refusal to consent to operations
for the treatment of cystic fibrosis.’ Situations in which courts have limited the ability
of parents to consent to inappropriate treatment on behalf of their child include re-
strictions on the ability of parents to consent to the sterilization of their children’ as
well as on their ability to consent to the participation of their children in research.”
Parental demands for non-therapeutic genetic testing clearly falls within the cate-
gory of circumstances where a court might restrict parental authority on the basis that
they are requesting inappropriate treatment that is contrary to the best interests of their
child. The benefits that testing may provide to parents, such as reduced parental anxi-
ety, are irrelevant to the best-interests analysis since it is from the perspective of the
child’s interests and not from the perspective of the parent’s interests that the analysis
must be performed’
Indeed, the best-interests analysis, enforced through the court’s
parens patriae jurisdiction, “exists for the benefit of those who cannot help them-
selves, not to relieve those who may have the burden of caring for them.’
0 Re Superintendent of Family & Child Service and Dawson (1983), 145 D.L.R. (3d) 610, [1983] 3
W.W.R. 618 (B.C. S.C.) [hereinafter Dawson]; Re R.K (1987), 79 A.R. 140, [1987] AJ. No. 265, on-
line: QL (AJ) (Prov. CL (Fam. Div.)); Re Wintersgill and Minister of Social Services (1981), 131
D.L.R. (3d) 184,25 R.FL. (2d) 395 (Sask. Unif. Fam. Ct.); M. (R.E.D.) v. Alberta (Director of Child
Welfare) (1986), 74 A.R. 23,47 Alta. L.R. (2d) 380 (Q.B.); Children’s Aid Society, supra note 75. See
also H. Rodham, “Children Under the Law” (1973) 43 Harv. Educ. Rev. 487.
9″New Brunswick (Minister of Health & Community Services) v. B. (1990), 106 N.B.R. (2d) 206, 70
D.L.R. (4th) 568 (N.B. Q.B. (Famn. Div.)); Dawson, ibiL See also American Academy of Pediatrics,
Committee on Bioethics, “Religious Exemption from Child Abuse Statutes” (1988) 81 Pediatr. 169.
“” Children’s Aid Society of the Region of Peel v. B.(C.) (1988), 8 A.C.W.S. (3d) 425 (Ont. Prov. Ct).
93 E. (Mrs.), supra note 82. For British jurisprudence on the ability of parents to sterilize their men-
tally handicapped children, see Re D. (a minor) (wardship: sterilization), [1976] 1 All E.R. 326, 2
W.L.R. 279 (Fam. D.) (where sterilization was denied on the basis that the child would likely appreci-
ate the nature of the operation by age 18 and would be able to make her own choice) and Re B. (a mi-
nor) (wardship: sterilization), [1987] 2 All E.R. 206 [1988] A.C. 199 (C.A.) (where sterilization was
permitted on the basis that the seventeen year old child had no understanding of the connection be-
tween sexual intercourse and pregnancy and would be unable to care for a child on her own). See also
J. Amen, “Limiting Procreation” in R.M. Veatch, ed., Medical Ethics, 2d. ed. (Sudbury, Mass.: Jones
and Bartlett, 1997) 103.
“A.M. Capron, “Human Experimentation” in Veatch, ibid., 135; Consent to Medical Care, supra
note 66 at 75-83 (where it is suggested that parents do have the power to consent to research so long
as it involves only a minimal risk of harm to the child).
” See Young v. Young, [1993] 4 S.C.R. 3 at 47, 108 D.L.R. (4th) 193, where Justice L’Heureux-
Dub6 commented: “The proposition is not one of ‘rights’; it is one of duty and obligation to the
child’s best interests … One cannot stress enough that it is fmm the perspective of the child’s interests
that these powers and responsibilities must be assessed, as the ‘rights’ of the parent are not a crite-
rion.” See also R (D.) v. S.(C.), [1993] 4 S.C.R. 141, 108 D.L.R. (4th) 287; New Brunswick (Minister
of Health & Community Services) v. C. (G.C.), [1988] 1 S.C.R. 1073, 85 N.B.R. (2d) 252; Racine v.
Woods, [198312 S.C.R. 173,24 Man. R. (2d) 314; King v. Low, [1985] 1 S.C.R. 87,58 A.R. 275.
9 E. (Mrs.), supra note 82 at 434, LaForest J.
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Since testing comes at a potentially high and irreversible cost, such as the risk of
serious bodily harm to the child through procedures such as non-therapeutic genetic
manipulation (e.g. biological parenting) as well as the risk of moral and social harm
that might result from stigmatization and discrimination, in the absence of overriding
benefits to the child, testing for non-therapeutic purposes should be prohibited given
that this practice would be contrary to the best interests of children.
3. Respect for the Future Autonomy of the Child
Restricting demands for non-therapeutic genetic testing can also be justified on
the basis of preserving the future autonomy of the child.’ That is, while testing for
therapeutic purposes can be validated on the grounds that it is in the best interests of
children and that they would have requested such testing themselves had they been
competent to do so, the testing of children for non-therapeutic purposes cannot be
justified on these bases and should be deferred until the “children” request such tests
for themselves as adults.
In preserving the future autonomy of children, we are preserving their right to
remain ignorant of their genetic status. As it has been said, ‘The ‘right’ not to know is
increasingly raised as a corollary of autonomy.”” This is a significant consideration
given that knowledge of carrier status can be burdensome even for an adult. For ex-
ample, despite early predictions that adults would make full use of presymptomatic
genetic testing for Huntington’s disease, only a minority of at-risk adults actually
choose to undergo such testing (approximately 10-15%).”‘ The demand for presymp-
tomatic genetic testing for breast cancer has also been well below expectations.”‘ It is
” In comparison with philosophy, the law has no definition of autonomy. Moreover, in law, the
terms autonomy and self-determination are not only used interchangeably but reference to both con-
cepts is usually made when discussing individual “rights”. See MA. Somerville, “Labels versus
Contents: Variance between Philosophy, Psychiatry and Law in Concepts Governing Decision-
Making” (1994) 39 McGill LJ. 179 at 185-91. Thus, the right to autonomy can exist even if the sub-
ject of the right is not yet capable of exercising his or her future autonomy. While the autonomy itself
lies somewhere in the future, the right to fully enjoy this future autonomy exists in the present.
“B.M. Knoppers & R. Chadwick, “The Human Genome Project: Under an International Ethical
Microscope” (1994) 265 Science 2035.
“G.J. Meissen & R.L. Berchek, “Intended Use of Predictive Testing by Those at Risk For
Huntington Disease” (1987) 26 Am. J. Med. Genet. 283; D.S. Markel, A.B. Young & J.B. Penney,
“At-Risk Persons’ Attitudes Toward Presymptomatic and Prenatal Testing of Huntington Disease in
Michigan” (1987) 26 An. J. Med. Genet. 295.
” D. Cniufurd et aL, “Uptake of Presymptomatic Testing for Huntington’s Disease” (1989) 2:8663
Lancet 603; GJ. Meissen et aL, “Predictive Testing for Huntington’s Disease with Use of a Linked
DNA Marker” (1988) 318 New Engl. J. Med. 535; J. Brandt et aL, “Presymptomatic Diagnosis of
Delayed-Onset Disease with Linked DNA Markers: The Experience in Huntington’s Disease” (1989)
261 J. Am. Med. Assoc. 3108.
“‘ E. Marshal, “Gene Tests Get Tested” Editorial Comment (1997) 275 Science 782.
2000]
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troubling that although most adults do not wish to have testing performed on them-
selves, such requests have frequently been made on behalf of children.’
When discussing children’s autonomy rights one must also bear in mind that the
social and economic ramifications of genetic testing are likely to be far greater in the
twenty-first century than they have been in the twentieth century. The reason is that
advances in genetic testing and genetic engineering will increasingly be accompanied
by “real world” effects in the future. One might say that while the twentieth century
gave birth to genetics, the twenty-first century will give it effect. When parents request
genetic testing for their children they do so with an understanding of its effects in to-
day’s world and are unlikely to understand the consequences that such testing may
have on their child in the future. Respect for the child’s autonomy rights would allow
the “child” to make its own decisions upon reaching adulthood with an understanding
of the world as it is then.
C. Mechanisms of Limiting Parental Access to Genetic Information
1. Clinical Judgment of Health Care Professionals
One way of restricting parental access to non-therapeutic genetic testing would be
to rely on the clinical judgment of health care professionals. Whenever physicians
would hold the opinion that testing would not be in the child’s bests interests, they
could simply refuse to acquiesce to parental requests for testing. This regulatory
mechanism would depend on the recognition that health-care professionals have a
right, or perhaps even a legal obligation, to refuse to provide medical interventions
that in their bonafide clinical judgment would be contrary to the best interests of their
patient, especially when the patient is a minor.
a. The Right of Health Care Providers to Refuse Demands for
Inappropriate Treatment
Health care professionals are not legally obliged to provide medically futile inter-
ventions merely to satisfy the autonomy rights of consenting patients.'” Critics of the
concept of medical futility have argued that it “confounds morally distinct cases: de-
mand for treatment unlikely to work, and demand for effective treatment supporting a
controversial end.”” As a result, some authorities have suggested that medical futility
should only be understood as comprising the former demand category, namely de-
‘ M. Morris et aL, “Adoption and Genetic Prediction for Huntington’s Disease” (1988) 2:8619
Lancet 1069; MJ. Morris et aL, “Problems in Genetic Prediction for Huntington’s Disease” (1989)
2:8663 Lancet 601 at 601.
“3 Picard & Robertson, supra note 76.
‘” C. Weijer et aL, “Bioethics for Clinicians: 16. Dealing with Demands for Inappropriate Treat-
ment” (1998) 159 C. Med. Assoc. J. 817 at 818.
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mand for ineffective treatment, such as the demand for an antibiotic to treat a common
cold. ‘”
While it remains uncontested that physicians are under no legal obligation to pro-
vide ineffective treatment,”‘ the legal position regarding effective treatment supporting
a controversial end is less clear. This issue is significant given that most genetic inter-
ventions are likely to fall within the latter category since they cannot be withheld on
the basis of being ineffective. The health care professional’s right to refuse demands
for effective yet inappropriate treatment will have to be hinged on something other
than the ineffectiveness or futility of the treatment
British courts have consistently held that the consent of a functionally competent
patient by itself does not impose upon health care providers the legal obligation to
provide treatment that is inconsistent with their own professional judgment.”‘ Al-
though Canadian jurisprudence is relatively sparse on this issue, there is evidence that
the British view is also a correct expression of the law in Canada. In Ney, the Supreme
Court of British Columbia applied the leading British case of Re R., quoting the pas-
sage in which Lord Donaldson held:
It is trite law that in general a doctor is not entitled to treat a patient without the
consent of someone who is authorized to give that consent. … However consent
by itself creates no obligation to treat. It is merely a key which unlocks a door.
… No doctor can be required to treat a child, whether by the court in the exer-
cise of its wardship jurisdiction, by the parents, by the child or anyone else. The
decision whether to treat is dependent upon an exercise upon his own profes-
sional judgment … ”
If health care professionals are not legally obliged to provide treatments that are
inconsistent with their own professional judgment, then parental requests for non-
therapeutic genetic interventions-interventions that do not offer the child immediate
therapeutic benefits in addition to being associated with the risk of harm–might be
denied on this basis. The right of physicians to refuse to provide interventions that are
inconsistent with their own professional judgment is not without philosophical foun-
dation. As one authority has argued, to force physicians to perform medical interven-
tions which they feel are contra-indicated would be to negate their right to conduct
“‘ Canada, Report of the Special Senate Committee on Euthanasia and Assisted Suicide: Of Life
and Death (Ottawa: Supply and Services Canada, 1995) at 45.
“* Picard & Robertson, supra note 76. See also R.D. Truog, A.S. Brett & J. Frader, ‘”he Problem
with Futility” (1992) 326 New Engl. J. Med. 1560.
“‘ Re R. (a minor) (wardship: medical treatment), [1991] 4 All E.R. 177 (C.A.) [hereinafter Re R.];
Re J. (a minor) (wardship: medical treatment), [1990] 3 All E.R. 930,2 W.L.R. (140) (CA.); Re J. (a
minor) (wardship: medical treatment), [199214 All E.R. 614,3 W.L.R. 507 (C.A.).
” Ney, supra note 74 at 56-57 [emphasis added].
2000] R FLORENCIO – GENETICS, PARENTING, AND CHILDREN’S RIGHTS
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themselves according to their own moral code or value system and would obviate
their autonomy rights in favor of the autonomy rights of consenting patients.”
A difficulty with this regulatory mechanism is that, since professional judgment
regarding the appropriateness of treatment is likely to vary, it would result in a hetero-
geneous application of the therapeutic-benefit test. Parents would simply have to visit
enough health care providers until they found one that was willing to comply with
their request for testing. This mechanism could also open itself up to abuse as some
physicians may not be fully aware of the potential harms of testing to the child and
may be willing to conduct any genetic test so long as the price is right.
b. The Legal Obligation of Health Care Providers to Refuse De-
mands for Inappropriate Treatment
Another approach would be to say that health care providers have a legal obliga-
tion to refuse demands for inappropriate treatment. According to this approach, health
care providers who do accede to requests for treatment that they know, or ought to
know, is contra-indicated “may be held liable for any injury which the patient suffers
as a result of the treatment.””
While an extensive examination of the application of negligence law to the provi-
sion of non-therapeutic genetic interventions is beyond the scope of this paper, a pre-
liminary analysis of some of the issues that are likely to arise will be presented.”‘ It
should be noted from the outset that the traditional objective of negligence law,
namely the ex post facto compensation of victims who suffered physical injuries or
property damage as a result of the fault of another, is largely incongruent with the
primary objective of adopting a precautionary approach towards behavioural genetics,
namely the prospective anticipation and subsequent reduction of the immediate and
cumulative risks associated with non-therapeutic genetic interventions in order to pre-
vent social, psychological and economic injuries before they occur. Unfortunately,
“‘ See A.S. Brett & L.B. McCullough, “When Patients Request Specific Interventions: Defining the
Limits of the Physician’s Obligation” (1986) 315 New Engl. J. Med. 1347 at 1349 [emphasis added],
where the authors noted that
[i]f a competent patient refuses to comply with a recommended intervention, the physi-
cian has not acted contrary to his or her own moral principles but has merely failed to
convince the patient to undergo the intervention. However, if the physician facilitates
the patient’s request for an unnecessary or harmful intervention to satisfy a principle of
respect for patient autonomy, the action reciprocally undermines the physician’s auton-
omy.
See also T.E. Quill & C.K Cassel, “Nonabandonment: A Central Obligation for Physicians” (1995)
122 Ann. Intern. Med. 368.
“o Picard & Robertson, supra note 76 at 265.
.The possibility of applying fiduciary law to the provision of non-therapeutic genetic interventions
will not be dealt with in this paper.
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this incongruence leads to many difficulties when it comes to applying the law of
negligence to the arena of behavioural genetics.
Difficulties arise in nearly every component of the negligence formula including
the standard of care, causation, and injury components. The injury component can be
used as an example. While some genetic interventions such as genetic manipulation
carry with them the potential of causing physical insult, most of the interventions are
associated with the risk of unorthodox injuries such as social, psychological, and/or
economic harm to both the individual user and to society as a whole. For instance, an
individual whose parents had him tested for Huntington’s disease, a late-onset mono-
genic illness, when he was a child might suffer psychologically from the knowledge
that he will develop the disease at mid-life. Given the nature of the injury, however, it
is unlikely that a course of action would be available to the plaintiff under our current
law. Reticent of the danger of an ever-widening circle of plaintiffs, courts have distin-
guished between emotional distress and nervous shock, and have only been prepared
to award damages in the latter case.”2
An individual whose genetic read-out predicts that she is predisposed to devel-
oping both alcoholism and criminality might suffer economic loss as a result of being
discriminated against by employers who might prefer to employ a more “genetically
conservative” candidate. While it is clear that a valid legal claim of discrimination
could be brought against the employer, could the individual also pursue the health
care facility for having provided the non-therapeutic genetic testing and/or her parents
for having requested such testing in the first place?”‘ Once again, given the nature of
the injury, it is unlikely that a course of action would be available to the plaintiff under
the current law of negligence. The circumstances in which tort law will accommodate
claims based on a purely economic loss”‘ have been greatly restricted by courts that
have traditionally been and continue to be fearful of indeterminate and unlimited li-
ability.”
As was noted from the outset, the adoption of a corrective justice system such as
the law of torts is an inappropriate means of dealing with an issue whose successful
resolution depends on the prevention of harm before it occurs. The quia timet injunc-
. As was stated by Lord Bridge in McLoughlin v. O’Brian, [1982] 2 All E.R. 298 at 311, “The first
hurdle which a plaintiff must surmount is to establish that he is suffering not merely grief, distress or
any other normal emotion but a positive psychiatric illness” See also V. Harpwood, Principles of Tort
Law, 3d ed. (London: Cavendish, 1997) at 43-45; W.V.H. Rogers, ed., Winfield & Jolowicz on Tort,
15th ed. (London: Sweet & Maxwell, 1998) at 159-70.
.. At present, parents are virtually immune from prosecution for the negligent decisions they make
concerning the fetus before it is born. Therefore, should testing occur prenatally, it is unlikely that a
successful case could be made against the parents. See Winnipeg Child and Family Services (North-
west Area) v. G(D.F), [1997] 3 S.C.R 925, 121 Man. R. (2d) 241; Dobson (Litigation Guardian of) v.
Dobson, [1999] 2 S.C.R. 753, 174 D.L.R. (4th) 1.
‘ A claim where an individual who has suffered neither personal injury nor property damage as-
serting that another’s negligence has resulted in his or her financial detriment.
“. L.N. Klar, Tort Law, 2d ed. (Toronto: Carswell, 1996) at 171-219.
2000] R FLORENCIO – GENETICS, PARENTING, AND CHILDREN’S RIGHTS
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tion, an injunction whose issuance does not require that a tort already be committed,
is probably the most preventative legal intervention that our private law has to offer. It
would of course be absurd to suggest a fetus or small child could avail him/herself of
this remedy in order to avoid being subjected to non-therapeutic genetic interventions.
What is instead required is a legislative moratorium on the clinical application of non-
therapeutic genetic interventions to minors.”‘
2. Legislation
An alternative to leaving physicians with the difficult and legally uncertain job of
making case-by-case assessments would be to enact legislation.”‘ Legislation could be
used to circumscribe parental access to only those genetic tests offering immediate
medical benefits to the minor. Access to non-therapeutic testing would be denied.
Such legislation would have to address the issue of the minor’s personal right of
access to genetic interventions. That is, it would have to address whether the right of
access should be deferred until the minor has attained the legal age of majority (age
based) or whether it should be deferred until the minor has developed the capacity to
consent to testing for him/herself (capacity based). This issue is significant given that
many requests for genetic testing are currently being made by adolescent minors in
the absence of their parents.”‘
The International Huntington’s Association and World Federation of Neurolo-
gists’ policy statement recommends that testing only be available to persons having
reached the age of majority.”‘ However, this policy statement as well as most of the
debate surrounding Huntington’s predictive testing has been centered on the situation
where parents are requesting testing for their young child and not on the scenario
where competent adolescents are requesting testing for themselves.'”
Premising the right of access to genetic testing on the age of majority would be
inconsistent with both Canadian case law and with the emerging recognition that
adolescents can make informed choices about their health. According to Canadian
case law, if a minor is capable of understanding the nature and purpose of a given
treatment as well as the consequences of giving or refusing consent to that treatment,
“‘ Behavioural genetic research would not be subjected to the moratorium. See eg. D.C. Wertz,
“Leave the Door Open to Research” (1994) 13:2 Politics & Life Sci. 235.
17 Some countries, such as France and Norway, have already begun to incorporate “therapeutic”
criteria into their legislation to curtail the use of genetic tests for sex selection and trait enhancement.
See Knoppers & Chadwick, supra note 98.
“, European Community Huntington’s Disease Collaborative Study Group, “Ethical and Social Is-
sues in Presymptomatic Testing for Huntington’s Disease: A European Community Collaborative
Study” (1993) 30 J. Med. Genet. 1028.
” “Predictive Test in Huntington’s Disease”, supra note 64.
M. Bloch & M.R. Hayden, “Opinion: Predictive Testing for Huntington Disease in Childhood:
Challenges and Implications” (1990) 46 Am. J. Hum. Genet. 1; M.Z. Pelias, “Duty to Disclose in
Medical Genetics: A Legal Perspective” (1991) 39 Am. J. Med. Genet. 347.
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then that minor’s consent is valid in law.”‘ Moreover, “the age of the child is simply
one of many factors that must be taken into consideration. The age, intelligence and
experience of the particular child must be considered, along with the nature and con-
sequences of the particular treatment. Thus, capacity may vary among children of the
same age:”” Further, the responsibility for determining a minor’s capacity rests with
the physician who is seeking the informed consent.’ Thus, as a matter of law, there is
substantial precedent for the view that adolescent minors should have access to ge-
netic interventions once they have developed the capacity to consent.
There is also a growing consensus that, as a matter of ethics, adolescent minors
should be entitled to consent to their own health care once they have developed the
capacity to consent.’ The reason for according greater ethical weight to the health
care decisions of capable adolescent minors is that their decision-making approxi-
mates that of adult decision-making and is therefore entitled to more deference.
Moreover, empirical evidence from disciplines such as developmental psychology and
“‘ Johnston v. Wellesley Hospital [19701 2
.R. 103, 17 D.L.R. (3d) 139 (H.CJ.); C. (J.S.) v. Wren
(1986), 76 A.R. 115, [1987] 2 W.W.R. 669 (C.A.); Re Y (A) (1993), I11 Nfld. & PE..R. 91, [1993]
N.J. No. 197, online: QL (NJ) (Nfld. Unif. Fain. CL); Walker, supra note 79; Ney, supra note 74. Ca-
pable minors can also consent to medical treatment in England, see Gillick v. West Norfolk and Wis-
bech Area Health Authority, [1985] 3 All E.R. 402, [1986] Cim. L.R. 113 (H.L.). In addition to case
law, provincial legislation has been enacted in several provinces in an effort to clarify when and how
minors may give informed consent to medical treatment. Whereas legislation in some provinces such
as Ontario is a reflection of the common-law rule (consent based on capacity), legislation in other
provinces such as Quebec is age-based. However, even in the case of age-based legislation, the age at
which minors can give their consent to treatment is well below the age of majority. For instance, in
Quebec the general age at which minors can consent to care, even care not required by their state of
health, is 14 (arts. 14 and 17 Civil Code of Qudbec-However, parental consent will be required if
there is a risk that the treatment may cause “grave” and “permanent” effects).
“‘ McCall & Robertson, supra note 82 at 165-66; M.L. McCall & G.B. Robertson, ‘The Common
Law Jurisdictions” in B.M. Knoppers, ed., Canadian Child Health Law: Health Rights and Risks of
Children (Toronto: Thompson Educational, 1994) 151 at 165-66.
” L.E. Rozovsky & BA. Rozovsky, The Canadian Law of Consent to Treatment (Toronto: Butter-
worths, 1990) at 56.
” Committee on Bioethics, “Informed Consent, Parental Permission, and Assent in Pediatric Prac-
tice” (1995) 95 Pedia. 314; R.H. Nicholson, Medical Research with Children: Ethics, Law, and Prac-
tice (Oxford: Oxford University Press, 1986) at 149; D.W. Brock, “Children’s Competence for Health
Care Decision-making” in L.M. Kopelman & J.C. Moskop, eds., Children and Health Care: Moral
and Social Issues (Boston: Kluwer Academic, 1989) 181 at 183; Group for the Advancement of Psy-
chiatry, Committee on Child Psychiatry, How Old is Old Enough? The Ages of Rights and Responsi-
bilities (New York: Brunner/Mazel, 1989) at 67, 70; A. Lynch, “Research Involving Adolescents: Are
They Ethically Competent to Consent/Refuse on Their Own?” in G. Koren, ed., Textbook of Ethics in
Pediatric Research (Malabar, Fla.: Krieger, 1993) 125 at 127-28; LA. Weithom & D.G. Scherer,
“Children’s Involvement in Research Participation Decisions: Psychological Considerations” in M.A.
Grodin & L.H. Glantz, eds., Children as Research Subjects: Science, Ethics, and Law (New York
Oxford University Press, 1994) 133 at 154.
2000]
R FLORENCIO – GENETICS, PARENTING, AND CHILDREN’S RIGHTS
557
psychiatry supports the view that adolescent decision-making can often approximate
that of adults.'”
Therefore, as a matter of law and ethics, if legislation is chosen as a means of
limiting parental access to non-therapeutic testing, such legislation should defer the
minor’s personal right of access to genetic testing until such time that the minor has
developed the capacity to consent to testing for him/herself.
Conclusion
In the twenty-first century, policymakers and regulators will have the important
and exceedingly difficult task of defining the acceptable limits of the intrusion of sci-
ence upon society. As advances in genetic testing and genetic engineering are in-
creasingly accompanied by “real world” effects, decision makers will be forced to
grapple with the issue of the law’s role in regulating genetic technology. This will be
no simple task.
Our lives would be easier if, for example, it were true that complex human be-
haviours in principle could not be manipulated by genetic means. We would
not need to worry about the extent to which we ought to engage in such ma-
nipulation because such manipulation would be impossible. Likewise, our lives
would be easier if it were true that genetic information about complex behav-
iours were inherently dangerous. We could then be spared the difficult work of
distinguishing between hurtful and helpful uses of iW16
The recommendation put forward in this paper is that, for the time being, genetic
technology should only be made available to society in circumstances where it offers
immediate therapeutic benefits of proven efficacy as well as a positive benefit-risk ra-
tio. This recommendation is premised on the precautionary principle requiring that
action be taken to avoid risks in advance of certainty about their nature.'”
The potential impact of behavioural genetics on the future, apart from the clear
benefits that will accrue from preventing serious disease, is not necessarily to be wel-
comed. Proceeding in a slow, step-by-step, incremental fashion is the most desirable
approach. We must not view each advancement in isolation. Most importantly, we
must not lose sight of the cumulative effects of today’s decisions on tomorrow’s soci-
ety. That is, genetic technology should only be permitted to intrude upon society in
those limited circumstances where there is substantial evidence that the intrusion
would be beneficial. Absent such empirical evidence, such as in the case of non-
‘2 L.A. Weithom & S.B. Campbell, “‘he Competency of Children and Adolescents to Make In-
formed Treatment Decisions” (1982) 53 Child Devel. 1589; R Abramovitch et al., “Children’s Ca-
pacity to Consent to Participation in Psychological Research: Empirical Findings” (1991) 62 Child
Devel. 1110; N. Ondrusek et al., “Empirical Examination of the Ability of Children to Consent to
Clinical Research” (1998) 24 J. Med. Ethics 158; C.C. Lewis, ‘A Comparison of Minor’s and Adults’
Pregnancy Decisions” (1980) 50 Am. J. Orthopsychiatry 446.
‘2 Parens, supra note 44 at 17.
7J. Hughes, “Xenografting: Ethical Issues” (1998) 24J. Med. Ethics 18.
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therapeutic genetic testing of children, it is recommended that decision-makers base
their regulatory efforts on the precautionary principle in order to avoid the risk of do-
ing serious harm.
