Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.
Assistant Professor of Law, University of Alberta, Canada
Biomedical technology has made a two-edged contribution to the so-called "treatment" of intractable neurological disorders. On the one hand, advances in medical technology have made it possible to prolong the lives of some afflicted with such conditions, while on the other, advances in genetic screening and testing make it increasingly possible to identify individuals and fetuses who will or are predisposed to develop an intractable neurological disorder, or those whose future offspring may have or develop such a disorder. Simultaneously then, and in their starkest form, developments in biomedicine can be seen in some instances to foster two conflicting aims: the prolonging of the life of those "suffering" from terminal intractable neurological diseases and the identification of others who are likely to produce - or in the case of the application of prenatal diagnosis - are in the process of reproducing a child who will develop such a condition.
It is the juxtaposition of these two biomedical phenomena, "intervention" at the end of life and "intervention" at the beginning of life or even pre-life that I want to explore. My focus will be specific to particular legal developments and ethical debates which have arisen recently in Canada. I have chosen to juxtapose the legal framework and issues raised in Canada with respect to end of life decisions in the context of neurological disorders of late onset with those that might potentially arise with respect to beginning of life decisions involving prenatal diagnosis and genetic screening and testing. While the specific legal framework of analysis is peculiar to Canada, the underlying motivating principles identified and applied by the Court, and certainly the issues upon which they have been brought to bear, may be generalized to other jurisdictions in so far as these are based on liberal values broadly shared in the Western world.
There may be a tendency among some scientists and medical practitioners to view the interventions of ethicists and legal scholars as uniformly aimed at restricting their practices and their research. I think this is a misconception on two grounds: not only are there lawyers and ethicists who are sympathetic and supportive of the efforts of research scientists and medical practitioners in the area of genetics, more significantly, it is important for those of us who are lawyers to convey to the research and medical community the ways in which their research and therapeutic practices inevitably engage social concerns which will be handled through the legal process, and to communicate to these communities the lenses through which their practices will be viewed once this happens. So long as the rationale for scientific research and medical advance is rooted in statements about social benefit and contributions to the improvement of health you should expect that actors outside the medical-scientific community, and more particularly patients themselves, will become involved in defining those benefits and their costs at both the individual and social level. Rightly or wrongly, and I believe rightly, health is not the exclusive province of the scientific-medical community. It involves the power to make decisions by patients themselves as well as social values about health, quality of life and state decisions concerning the allocation of scarce funds. In this paper I will illustrate this with respect to a particular case in Canada - Rodriguez v. British Columbia involving a neurological disorder of late onset, and how our own Supreme Court has attempted to define the values and legal rules which should inform medical practice in this case. From a discussion of this case I will attempt to draw out the ways in which these same values and legal rules may inform genetic screening, testing and prenatal diagnosis with respect to intractable neurological disorders.
Many in the scientific-medical community see the challenge of ethics in terms of adopting codes of ethics and national and international policies in the area of genetics. The medical profession in western countries has a strong tradition of self-regulation through professional bodies and codes of conduct. For many, the adoption of codes of conduct is seen as a way to refine and reinforce this tradition of self-regulation. There may be reluctant acceptance of the need to participate in the making of national and international policies as a supplement in order to allay the fears of the lay public while allowing the maximum scope for scientific discovery and the development of novel therapies. I would wish to emphasize that notwithstanding these efforts, in a large number of western countries these policies and codes will inevitably become embroiled in controversy and may very possibly end up before various courts and tribunals. Since this possibility cannot be prevented or pre-empted, it is worth discussing what kinds of issues may arise and what principles may be applied to resolve them.
The contextual aspect of ethical decision making raises questions about the universality of legal/ethical principles and in particular about their application. One aim of those participating in the international arena of bioethics is the articulation and development of basic codes of ethical norms and practice specific to a discrete area of medical practice - for example: genetic screening and testing, genetic counselling, artificial insemination, withdrawal of life supports etc.. Bioethicists (and others) also strive to articulate and develop universal statements of principle which are to govern and structure research and therapy. Even if we agree that certain legal and/or ethical principles are universal, their interpretation and application will certainly vary. In the Rodriguez case which I will be discussing, we see how this is the case even within national and cultural boundaries, let alone across such boundaries. Moreover, the application of such principles will be contingent upon the precise medical practices operating within a country, the nature of legislation, and the policies and practices which currently operate. For example, is abortion legal and what kinds of limitation are imposed on it? What is the public attitude and law with respect to suicide? How are the disabled accommodated and integrated within society?
We can look at decision making with respect to both the end of life and the beginning of life situations in terms of three nested contexts with areas of overlap in between. There is the traditional "private" context of the family, in which individual family members, parents or prospective parents, and caregivers (who may be parents, spouses, children or even grandparents or grandchildren depending on the case and the setting) make decisions concerning their own lives and the kind of care they wish to give members of the family.
The next context is that between the physician and the medical community generally and the patient. This context has both a public and a private character. While the consultations between an individual physician and her patient are private, the substance of standard medical practice, and the scientific consensus about medical procedures, are public and social. This includes not only specific therapeutic procedures, but also determinations about diagnosis, including what is a disease or a medical condition.
Finally there is the context of authoritative state action. This context includes both laws and regulations as well as policies and allocations out of the state budget. In modern democracies these actions are subject to political scrutiny and in different ways may be disputed before various types of tribunals. In strict terms, only this final context is open to judicial review on constitutional grounds.
I want, however, to emphasize the ways in which the middle context, which may be broadly termed "social" has effects on both the intimate and the legal political sphere. The ways in which questions about health are framed in biomedical discourse will shape the framework of discussion between doctor and patient and inside the intimate circle of the family. The ways in which medical consensus is communicated will also affect how politicians and judges look at medical problems. We cannot ignore also, the fact that medical and scientific discourse is also subjected to social influences outside of scientific methodology.
The reason why I have chosen to analyze the implications of a particular constitutional case recently decided in Canada is two fold. First, because the case involves the legal treatment of a woman with an intractable neurological disorder and thereby requires them to consider the conditions of the life of an individual afflicted with this disease. Second, because in the process of adjudicating the specific legal issues in this case, the court focuses more generally on an examination of individual rights and the rationales for their restriction in a medico-legal context. Any attempt to restrict individual rights, whether by the state, the medical profession or even another family member would require an explicit rationale which engages basic ethical and legal principles and values. By looking at Charter jurisprudence we gain a sense of those basic values which will be invoked even in non- constitutional cases where the state is not a party to the dispute.
In the case of Rodriguez v. British Columbia, recently decided by the Supreme Court of Canada, Sue Rodriguez, a 42 year old woman suffering from amyotrophic lateral sclerosis (ALS), an untreatable intractable neurological disorder, asked the court to find that a provision of the Canadian Criminal Code which makes it an indictable offence to aid or abet a person to commit suicide, whether suicide ensues or not, violates her individual rights under the Canadian Charter of Rights and Freedoms. In particular Sue Rodriguez argued that while she would like to continue to live as long as she still has the capacity to enjoy life, she was suffering from an incurable disease, understood the inevitability of how her life would end and wished to control the circumstances, timing and manner of her death. However, she argued, by the time that she is no longer able to enjoy life, she will be physically unable to terminate her life without the assistance of a physician. Such assistance however, would constitute an illegal violation of the Criminal Code which prohibits the assistance of suicide. While Ms. Rodriguez would not commit a criminal offence, the party assisting her would. This result, she argued, deprives her of her rights to live her remaining life with the inherent dignity of a human person, the right to control what happens to her body while she is living and the right to be free from governmental interference in making fundamental personal decisions concerning the terminal stages of her life. (Rodriguez, p. 15).
In a five to four decision, the majority of the court upheld the constitutionality of the Criminal Code provision with the result that Ms. Rodriguez could not legally engage in a physician- assisted suicide. The majority opinion considered whether the Criminal Code prohibition against physician assisted suicide violated that provision of the Canadian Charter of Rights - our Bill of Rights - which provides that:
7. Everyone has the right to life, liberty and security of the person and the right not to be deprived thereof except in accordance with the principles of fundamental justice.
In interpreting this provision the majority opinion stated that a consideration of the rights to life, liberty and security of the person cannot be divorced from the value of the sanctity of life. (Rodriguez, p. 15) and that security of the person, by its nature, cannot encompass a right to take action that will end one's life as it is intrinsically concerned with the well-being of the living person and is rooted in the deeply held belief that human life is sacred or inviolable. Further, the majority judgement queried the degree to which the concept of sanctity of life could include notions of quality of life and added that the value of sanctity of life has historically precluded individuals from being able to choose to involve others in the infliction of one's death.
The court rejected the argument of Sue Rodriguez that in the case of a terminally ill person the issue was not one of choosing death over life, but rather, the time and manner of death. The court drew a distinction between choosing death and allowing natural forces to run their course. "Even when death appears imminent, seeking to control the manner and timing of one's death constitutes a conscious choice of death over life." (Rodriguez, p. 17) In their view, "life as a value is engaged even in the case of the terminally ill who seek to choose death over life." (Rodriguez, p. 17). Therefore, the right to security of the person must be considered in light of the other values protected in s. 7 - life and liberty.
However, the majority confirmed that security of the person encompasses a notion of personal autonomy involving, at the very least, control over one's bodily integrity free from state interference and freedom from state-imposed psychological and emotional stress. With respect to the determination of whether Sue Rodriguez's security of the person interest was impinged upon by the operation of Criminal Code prohibition, the majority decision stated:
The effect of the prohibition ... is to prevent the appellant from having assistance to commit suicide when she is no longer able to do so on her own. She fears that she will be required to live until the deterioration from her disease is such that she will die as a result of choking, suffocation or pneumonia caused by aspiration of food or secretions. She will be totally dependent upon machines to perform her bodily functions and completely dependent upon others. Throughout this time, she will remain mentally competent and able to appreciate all that is happening to her. Although palliative care may be available to ease the pain...[it] will not prevent the psychological and emotional distress which will result from being in a situation of utter dependence and loss of dignity. That there is a right to choose how one's body will be dealt with, even in the context of beneficial medical treatment, has long been recognized by the common law. To impose medical treatment on one who refuses it constitutes battery, and our common law has recognized the right to demand that medical treatment which would extend life be withheld or withdrawn. In my view, these considerations lead to the conclusion that the prohibition in [the Criminal Code provision] deprives the appellant of autonomy over her person and causes her physical pain and psychological stress in a manner which impinges on the security of her person.(Rodriguez, p. 19)
Notwithstanding that the majority found that Sue Rodriguez's right to security of the person had been infringed by the operation of the Criminal Code provision forbidding assisted suicide, the court nonetheless found that the provision was valid because it was not contrary to principles of fundamental justice. Essentially, the court found that in the context of assisted suicide, Canada and other western democracies recognize and apply the principle of sanctity of life - that human life must be respected and that we must not undermine the institutions that protect it. In the court's view, the Criminal Code provision seeks to uphold the respect for life and to discourage those who are vulnerable from taking their lives or from being persuaded by others to take their own lives. It was the view of the majority that the various concerns about abuse and the difficulty in creating safeguards to protect those who are most vulnerable justify a blanket prohibition on assisted suicide and that it is not arbitrary or unfair, but is reflected in the fundamental values of our society.
In response to the assertion of Sue Rodriguez that to subject her to needless suffering is to rob her of her dignity, the court found that not every law that fails to respect individual dignity violates principles of fundamental justice. Here the court seems to imply that sanctity of life as a value can trump individual dignity. Moreover, in his analysis, Sopinka J., writing for the majority, found that he was obliged to balance the interests or rights of the individual against the state's interest and purpose in upholding the legislation. In this case, he found, after examining legislative history, law reform reports, the right of patients to refuse consent to medical treatment and practices in other western countries, that the purpose of forbidding assisted suicide was to preserve life and protect the vulnerable, that abuses could not be prevented in the absence of a prohibition and that the participation by one individual in the intentional death of another is morally and legally wrong.
In a minority decision, McLachlin J. argued that the operation of the Criminal Code provision infringed Ms. Rodriguez's right to security of the person by limiting what she could do with her own body. She argued that this limitation of the right to do with one's body what one chooses is not in accordance with the principles of fundamental justice because the physically able person is legally allowed to end his or her life (attempted suicide and suicide are not criminally penalized in Canada), while the person who is physically unable to accomplish this act is not allowed to do so. It is not justifiable to allow those who are able bodied to make this choice while denying it to those who are not. Moreover, she denied that the state had an interest in absolutely forbidding anyone to help end the life of another since Parliament has not consistently criminalized acts which cause the death of another - where there is a valid justification for bringing about the death of another, the person who does so will not be held criminally responsible. In her view, two justifications were present in the case of Sue Rodriguez. First, that of "giving her the capacity to end her life which able-bodied people have as a matter of course", and second, "her clear consent and desire to end her life...when, in her view, it makes no sense to continue living it." (Rodriguez, p. 48).
Taken together, these reasons suggest that in the battle for primacy between the social values of sanctity of life on the one hand and individual dignity and quality of life, as subjectively defined and expressed, on the other, individual dignity and quality of life received pride of position. This position was reasserted when McLachlin responded to the view that permitting assisted suicide might demean the value of life by stating:
But what value is there in life without the choice to do what one wants with ones's life...One's life includes one's death. Different people hold different views on life and on what devalues it. For some, the choice to end one's life with dignity is infinitely preferable to the inevitable pain and diminishment of a long, slow decline. (Rodriguez, p. 49).
Moreover, McLachlin, J. stated that fear about the wrongful abuse of power that some may have over the weak and ill that may end the lives of these person without their consent is not a consideration which should be accounted for at this stage of the analysis. In her view, it is not appropriate for the state to thwart the exercise of individual rights by attempting to bring societal interests into the analysis. A consideration of societal interests as balanced against the rights of the individual is a second level of analysis to be dealt with under s. 1 of the Charter, where the Crown (state) has the burden of proving that the impugned legislation is demonstrably justified in a free and democratic society. In her opinion, the state did not discharge this burden, since the absolute prohibition on assisted suicide was not necessary to ensure that killings without consent or with improperly obtained consent did not occur. The state could have achieved this objective in ways which would still permit a freely consenting individual "with a full appreciation of all the circumstances", who is physically unable to take her own life to obtain assistance to do so.(Rodriguez, p. 51).
Finally, in a second minority judgment, the Chief Justice,focused his inquiry not on the rights to life, liberty and security of the person, but on the right to equality guarantied in s. 15(1) of the Charter of Rights. That section provides that:
15. (1) Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.
In his view the Criminal Code provision criminalising assisted suicide "creates an inequality since it prevents persons who are or will become incapable of committing suicide without assistance from choosing that option in accordance with law, whereas those capable of ending their lives without assistance may decide to commit suicide... without contravening the law."(Rodruguez, p. 70). (My emphasis). This inequality - the deprivation of the right to choose suicide - may be described as a burden since it deprives those who are subject to this inequality of the right to make decisions about their person. For them, the fundamental values of individual autonomy and self-determination have been limited in a way they are not for people who are able to end their lives without assistance. This inequality is imposed on persons unable to commit suicide unassisted only because of a physical disability, one of the "suspect" personal characteristics which is among the grounds of discrimination prohibited by our Charter of Rights and Freedoms.
Having found the provision of the Criminal Code to violate individual constitutional rights, he determined that the state's infringement of that right could not be justified. While the state's objective of protecting vulnerable persons from being coerced into committing suicide is important, the Criminal Code provision which prohibits all assisted suicide is over-inclusive. "Vulnerability...is simply imposed on all people who happen to be physically unable to commit suicide independently and the right to choose suicide is therefore removed form this entire class of persons."(Rodriguez, p. 81). Those who are not vulnerable or do not wish the state's protection are nonetheless included solely on the basis of their physical disability. As Lamer, C.J. states:
An individual's right to control his or her own body does not cease to obtain merely because that individual has become dependent on others for the physical maintenance of that body; indeed, in such circumstances, this type of autonomy is often most critical to an individual's feeling of self-worth and dignity. (Rodriguez, p. 79).
Transposing the logic and principles derived from the Rodriguez case to beginning of life situations raises the problematic nature of legal decision making in the context of uncertainty, possibility and eventuality, which, as with the case of anticipated assisted suicide is an issue that arises in the context of genetic screening and testing. In the absence of possible and effective therapies or treatments, the primary aim of prenatal diagnosis and some genetic screening is to provide information that will enable individuals or couples to make decisions about procreation - whether to bear the risk of producing a child who will have or develop a genetically linked or determined condition, or whether to abort a fetus with such a condition.
One of the attractions of genetic research is the potential it bears to enable predictions of who may be afflicted with particular diseases and to predict in advance the future course of disease. This kind of information is undoubtedly useful and important where it empowers patients to take decisions concerning their own actions and to make arrangements concerning their own lives and preparations for the care of intimate loved ones. At the same time however, this same predictive power can also be used to make judgements about diseases which have yet to present any symptoms and where the timing and manner of the presentation of symptoms as well as the future course of the disease may be highly uncertain. Yet the notion that a disease or disorder is "preprogrammed" in the genes of an individual exercises a powerful attraction on the current imagination and suggests a false certainty about, or at least a temptation to overstate, the linkage between genes and disease. One danger here is that qualitative and subjective understanding of personal health may be undermined or pre-empted by "scientific" and empirical judgements. Genetic screening and testing reveals information which is only predictive but upon which current decisions may have to be made. For example, that my fetus will have a particular genetic condition and therefore manifest certain characteristics and therefore its life and mine would take on certain qualities. Such anticipatory decision making causes distress in the legal arena, where the method and practice are to attempt to arrive at universalizable principles which yield certain outcomes. No legal regime can account for all contingencies.
The debate in the Rodriguez case focused on the values which deserved paramount protection and which would give particular rights to patients and give medical practitioners the authority to act on the patient's behalf. Ultimately, the crux of the debate about the end of life concerns the quality of life to be endured and the place of suicide as an affirmation of what made life worth living. At the beginning of life, the value of the quality of life will be decided with respect to acts of selective procreation based on projections about the quality of life of the potential person as well as the quality of life of the parents.
As a matter of principle however, the Charter of Rights can only protect living persons. The context of decision making with regard to reproductive genetic screening and testing involves both living persons and prospective persons. The issues which concern living persons and prospective persons are not the same, and the interests of prospective persons cannot be subsumed under and may not be reconcilable with those of living persons. With respect to genetic testing and prenatal diagnosis, therefore, courts will look to the interests of those persons directly implicated, and only afterwards to any societal interests which may be adduced to restrict their individual rights and freedoms. Security of the Person and Autonomy
Informed consent can be considered a threshold issue of security of the person in a medical context. There is a legally recognized right at common law reiterated in the Rodriguez case, to choose how one's body will be dealt with even in the context of beneficial medical treatment. The imposition of medical treatment on one who refuses it is battery. In the context of genetic screening and testing, this raises interesting problems. Arguably mandatory screening or testing programs involving direct non-consensual physical intervention would constitute battery. Therefore, any genetic screening and testing procedures would need to be voluntary. Only newborn screening for at-risk newborns to be tested for immediately treatable diseases may be an exception. Questions will arise about the legality of testing or screening where consent had been given for physical intervention but where the production of genetic information was not specifically consented to.
Prenatal diagnosis implicates the autonomy of mothers (parents) in choosing the risks of bearing to term a fetus likely to become disabled. Prenatal diagnosis is directed at the health of potential offspring, and secondarily on the distress this would cause the mother (parent). The legal framework provided by the Canadian decisions is unambiguous with respect to a woman's right to terminate a pregnancy but is more ambiguous with respect to access to genetic information on which to base such a decision. Fetuses in utero are not persons under the Canadian Charter of Rights and Freedoms and therefore do not have any right to life or to bodily integrity. There can be no doubt that the mother is implicated in prenatal diagnosis and therefore, courts would certainly protect her right to seek an abortion without state interference, without the right of any other person to intervene. Under Canadian law there are no restrictions on a woman's right to terminate her own pregnancy, although the court recognized a limited state interest in the life of a fetus. Abortion is considered the right of a woman to protect her own bodily integrity and acknowledges she may require medical assistance to do so. The logic is reflexive: a woman may seek medical help to terminate the life of a fetus to protect her own bodily integrity. The majority in Rodriguez saw no parallel between the medical assistance sought in an abortion and medical assistance to terminate the patient's own life, since to seek assistance to terminate one's own life vitiated the substance of "security of the person" by negating life. All the dissenters, however adopted this reflexive logic and advanced arguments supporting their contention that control over the end of one's life was an integral aspect of life and bodily integrity understood in terms of the security of the person. However, where arguments in favour of prenatal diagnosis and genetic testing are justified in terms of "societal interests" or "the benefit of future generations" the logic of decision making is not reflexive. It refers to another potential person or body.
The exercise of autonomy with respect to quality of life issues may require us to consider the problem of agency as an important threshold issue in cases dealing with assisted suicide as well as genetic screening for neurological diseases of late onset. In the one case, a patient is unable to choose the time and manner of her death unaided, while in the case of genetic testing and prenatal diagnosis, the quality of life considerations concern both potential offspring and parents. Here, it may be relevant to distinguish neurological disorders of late onset from those of early or childhood onset. In the latter case, arguably there are important quality of life considerations for the parents who may be required to devote their lives to caring for a severely disabled child. In the former case however, a child may grow to adulthood showing few if any symptoms. It is therefore proper to question both the agency of the parents and the attending physicians advising them. After all each of these actors may be involved in making judgements and indeed may exercise choices concerning the quality of life of third parties. From the perspective of liberal individualist values embedded in the Canadian legal system and Western legal systems generally, this kind of intervention may be seen as paternalistic or discriminatory. These issues become particularly relevant in the context of discussions about genetic responsibility.
Recently, some scholars have raised the possibility of a doctrine of "genetic responsibility" arguing that individuals have a responsibility not to knowingly procreate children who are disabled and who would therefore constitute a burden to society. It has been argued, for example, that "carriers of certain disorders should refrain from producing an afflicted child" or where they have a genetic predisposition, from exposing themselves to certain conditions that are likely to provoke the condition. This reasoning however, presumes that individuals have a responsibility to be tested, even if they do not want to go through the physical invasion of a genetic test or confront knowing about their genetic predispositions or condition, or those of their possible children. In the absence of such a compulsory duty or responsibility to undergo genetic testing or screening (which could arguably constitute battery) the "principle" of genetic responsibility would only be applicable to those who had voluntarily undergone genetic screening or testing creating two classes of people those subject to a standard of genetic responsibility and those who were not, determined on the basis of their willingness to consent to genetic testing. This issue of genetic responsibility is extraordinarily problematic and raises further questions: i. To whom is this responsibility owed and on what basis? To society? ii. Which genetic conditions, diseases etc, do individuals have a responsibility to prevent or avoid? iii. Who should bear the burden of genetic responsibility? Can prenatal diagnosis performed only on pregnant women be justified? iv. What about genetic symptoms triggered by exposure to particular work environments? v. What are the legal consequences of formulating an individual obligation to the unborn? vi. How does cost benefit analysis affect the status of the disabled and their families? Are we as a society going to refuse to "treat" them or provide for their needs because of the "irresponsibility" of their parents? vi. On what basis may one distinguish between a known genetic predisposition and one which is unknown or for which no test exists? vii. Will emphasis on individual responsibility for genetic illness, undermine social responsibility for treatment and care of affected individuals?
The restriction of reproductive rights of persons with known genetic predispositions may well be resisted by Canadian courts, who have, since the enactment of the Charter been reluctant to restrict individual rights on the basis of a potential harm to society. The actual behaviour of definable individuals may be restricted by reference to a potential social harm. In Canada's legal system the state is not precluded from exercising authority on behalf of societal interests even if this may conflict with individual rights under the Charter so long as the measures adopted are consistent with a free and democratic society and are proportionally or minimally designed to achieve the ends of the social good at issue. In practice, our courts have surveyed the norms and trends at work in analogous Western jurisdictions to determine what is consistent with a free and democratic society. Such a survey was adopted by the Court in the Rodriguez case when they looked at provisions concerning assisted suicide in penal codes of Western Europe. Discussions such as occur at this conference may well be referred to in future Canadian cases.
We should not be surprised should the court strenuously resist placing restrictions on the reproductive rights of a definable class of the population. Canadian law has in recent years seen the gradual strengthening of consent requirements. Patients have the right to make informed choices concerning their own bodies and have the right to refuse any treatment which they judge not to be in their own interest. Our courts have held that the potential harm caused by releasing psychiatric patients does not warrant their being confined against their will, nor is it any longer legal for the developmentally disabled to be sterilized without their consent. In the Rodriguez case, Madam Justice Beverly McLachlin firmly resisted restraining individual behaviour on the basis of a potential social harm even where the effective exercise of autonomy had to be carried out through the agency of another person (physician).
Genetic responsibility can be regarded as a thinly disguised eugenic argument, which places the financial interests of society or the well being of future generations as a paramount value, but cloaks that interest in the language of individual responsibility. By couching a eugenic purpose in individualistic language, its authors may well hope to avoid judicial scrutiny on the basis of personal autonomy. This demonstrates an attempt to introduce a value in the "social" context which does not meet the threshold of state action needed for judicial review, but which nevertheless implies real burdens to individuals and families in the context of intimate decision making. If adopted in medical consultations, such a doctrine or line of argument could place an unusual burden on vulnerable families which may arguably violate the injunction to "do no harm." In the Rodriguez case, the court was sensitive to the problem of the vulnerability of particular populations to suggestion. There may be doubts about the effectiveness of informed consent where the carrier or potential mother has no personal experience of the disease in her immediate family and therefore no real knowledge of the pain or burden it may impose, or conversely, there may be cases where the prior appearance of the disease may provoke heightened anxiety and fear among those who are diagnosed as carriers and whose emotional state may be relevant to the exercise of informed consent. We should not lose sight of the extent to which individual autonomy may be contingent on the way questions are framed. Autonomy means not only the right of the individual to say yes or no to a particular procedure, we may also have to ask what the impact is of being asked to make a particular decision at a particular time, and how facing certain questions concerning life and health may enlarge or restrict individual autonomy.
If "genetic responsibility" is justified on the basis of a responsibility not to inflict unnecessary pain on one's future children, then this doctrine in the context of prenatal diagnosis raises some of the same legal issues which in some jurisdictions have been used to restrict the autonomy of pregnant women who are addicted to drugs or alcohol. In Canada fetal "rights" cannot trump the mother's autonomy, but this is not the case elsewhere. Moreover, by raising the issue of responsibility to the unborn one is already constructing rights to be applied against living adult mothers. Because genetic testing only reveals a probability that a person's offspring will have a specific genetic trait, a concept of genetic responsibility would entail prenatal diagnosis to ascertain whether a fetus did indeed have a trait linked to a particular disorder. Prenatal diagnosis is however exclusively undergone by women. Therefore, the actual physical and emotional burden and intervention of prenatal diagnosis and testing, arguably procedures required to comply with genetic responsibility, will be born entirely by women.
Individual genetic responsibility ignores entirely the social context within which this responsibility is identified and targeted and within which certain genetic illnesses manifest themselves. From a legal perspective the identification of genetic risk factors should not outweigh other risk factors in the formulation of policy responses to disease and responsibility. Blue collar workers exposed to occupational health hazards may be more prone to certain disabilities irrespective of the fact that genetic pre-disposition cuts across class lines. If "genetic responsibility" is justified in terms of an obligation to society, arguably there should be a concomitant responsibility placed on "society" generally to ensure that the social triggers, i.e. malnutrition, health and environmental hazards etc, which trigger such genetic predispositions be avoided.
Here I would raise the very real danger that in the current climate in my country and others, where the cost of medical care is receiving stringent scrutiny, a simplistic cost benefit analysis will be applied to the cost of caring for those afflicted with neurological disorders as a "preventable" burden to society. This has the potential of polarizing society among those considered "normal" and those who are stigmatised as unfairly burdening the medical system. A cost-benefit justification for the imposition of genetic responsibility ignores the social costs which result from the application of this analysis, including the conflicts between the larger community and those who bear genetically "disabled" children. It also fails to recognize that the offspring, who cannot be held genetically responsible for their own genetic condition, will be stigmatised by the operation of such a principle.
Moreover, at any given point in time only a portion of the diseases with a genetic factor will have been discovered, thus unfairly dividing the population among those with known susceptibility to genetic disorders and those with an unknown potential, yet there is the real possibility that there will be pressure to restrict the reproductive rights of those in the former group even though with respect to susceptibility to genetically linked diseases they may be no different than other members of the population. Different people have different genetic susceptibilities. Indeed we probably all have certain susceptibilities for various "negative" conditions. However, the concept of genetic responsibility will place increased burdens on those whose conditions we learn to diagnose earlier or on those whose condition we consider to be more serious or burdensome as a society. How we characterize or classify genetic disability v. endowment will be conditional upon those conditions or characteristics we value or denigrate.
We should also be cognizant of the potentially chilling effect of widespread genetic screening and prenatal diagnosis on the search for therapies for the genetically linked diseases -- already stigmatised as a preventable social burden. There may be little incentive to look further for ways to treat the symptoms of late onset neurological disorders once effective tests have been developed.
The question of under what circumstances, if any, the state may screen populations for public health purposes without seeking to inform individuals is somewhat more ambiguous. It may be legitimate and necessary for a government to screen in order to forecast future healthcare needs. The need for this kind of screening would have to be weighed against the dangers of accidental or deliberate disclosure of personal genetic information or stigmatisation. An argument would have to be made for the public health concern under the provisions allowing for societal interests under the Charter. However, equality considerations may constrain the power of the state.
Suppose, for the sake of argument, that the state undertook a policy of screening for genetic predispositions to neurological disorders as part of a general package of prenatal care, making access voluntary so that couples at their own discretion could make use of the genetic information for their own reproductive decisions and if they declined only statistical non-identifiable information, useful for healthcare planning would be gathered. Such a screening program could be justified as an element in a preventive healthcare program intended to limit future healthcare costs. Would there be grounds to challenge such a program under the Charter?
Chief Justice Lamer, in his dissent in the Rodriguez case, considered that equality, and freedom from discrimination was the paramount value at issue. He argued that the Criminal Code provisions forbidding assisted suicide deprived Sue Rodriguez of the to choose the time and manner of her death - a right that she would have enjoyed had she been able-bodied. In effect she was asking to be exempted from criminal sanctions not for herself, but for her designated agent in committing suicide, a person who would make it possible for her to exercise autonomy which would otherwise be curtailed by her disability. Using his reasoning, genetic screening as state policy may be prohibited by the Charter under s. 15 (1).
The Charter of Rights and Freedoms explicitly forbids discrimination on the basis of physical disability. Furthermore, the courts have held that such discrimination need not be intentional to be prohibited, and moreover, discrimination was defined as requiring the courts to remedy or prevent discrimination against groups subject to stereotyping, historical disadvantage and political or social prejudice in Canadian society.
Genetic screening, if intended to assist women in terminating pregnancies where the fetus is known to be a carrier of a genetic disorder of late onset could arguably be considered stereotyping. Any policy of screening would have to have as its purpose the identification of individuals sharing some genetic anomaly, from which certain consequences could be presumed to flow. Screening by its very nature creates a class of persons sharing a common characteristics which others do not. If this characteristic is linked, directly or indirectly to a particular disorder or disability, and if any differential burden is proposed with respect to those persons sharing that characteristic, then the equality provisions of the Charter could be invoked. Any express or implied selection of fetuses with specific genetic characteristics for destruction on the basis of a state mandated screening program could, I think, be in violation of the Charter. There can be no preventing the termination of a pregnancy if the woman so chooses, but genetic screening may itself constitute a breach of S. 15 (1), not on the grounds of discrimination against the fetus, which is legally impossible, but on the grounds that adult individuals who are already carriers are thereby stigmatised and stereotyped as not deserving of life and their lives devalued relative to other members of Canadian society. Indeed the intervention of COPOH (the Coalitions of Provincial Organisations of the Handicapped) in the Rodriguez case made nearly this point, when they stated "the negative stereotypes and attitudes which exist about the lack of value and quality inherent in the life of a person with a disability are particularly dangerous in this context." (Rodriguez, p. 84).
It would remain to test this breech against the provisions of the Charter which limit individual rights in the interest of society. This however, would require the courts to find in favour of eugenic practices, a finding which would run smack against the logic our courts have already employed with respect to preventive incarceration of psychiatric patients and the reproductive rights of the developmentally disabled. On the other hand, should somatic or germ line therapies become available in the foreseeable future, these could justify genetic screening. Somatic therapy would be of benefit to all potential sufferers of a disorder and would arguably enhance the quality of their lives and protect the integrity of their persons.
It is clear that the court in the Rodriguez case had tremendous difficulty separating the social implications of assisted suicide from the specific facts of the case of Sue Rodriguez. The justices were unanimous in sympathizing with her plight. In the case of genetic screening or testing however, it becomes far more difficult to focus on the plight of an entity which is not yet a person or an individual, and on the potential victims of stereotyping who are not the direct subjects of genetic screening or testing. Strict confidentiality of test results does not remove the threat of stereotyping from those who are already afflicted by genetic disorders. So long as screening and testing procedures are known to be generally available, and their implied purpose is to restrict the birth of individuals with known characteristics the existence of these procedures stigmatises and devalues the lives of those already afflicted by the disease.
In the Rodriguez case, the justices struggled to construct a value context which would clarify the application of constitutional rights with respect to Sue Rodriguez's expressed desire to control her destiny in the face of an intractable neurological disorder. They felt constrained not only to protect life, but to project in the case of Sue Rodriguez, what it was about life which made it worth living. Ultimately four of the nine justices of the court, using three distinctive arguments considered that it was precisely the aspect of control over one's personal destiny which made life worth living, while the majority declined to make such a determination, preferring, on balance to allow "nature" to take her course. In the genetic context, such controversies which are raised before tribunals may also require the courts to make determinations about the ultimate value of life, and on this basis who will be empowered to make decisions concerning it. The genetic context may require courts to exercise an awesome authority which will be informed by discussions in the medical-scientific community on these issues. Our deliberations here and in other venues take on radically heightened significance when viewed in this light. The relationship which the medical scientific and bioethics community establishes between genetics, disease and disability may well be used to define the degree of autonomy which individuals may exercise, and the equality they have.