The Ethics of Genetics in Human Procreation

Hille Haker, Deryck Beyleveld

• Publisher: Routledge
• Year: 2018
• Print ISBN: 9781138715165
• eBook ISBN: 9781351770859
• Edition: 1
• Topic: Ciencias sociales
• Subtopic: Sociología

This title was first published in 2000: This third volume of proceedings of the European Network for Biomedical Ethics focuses on the ethical issues surrounding the debates on reproductive medicine and genetics in human procreation. Central issues include procreation and parenthood, moral protection of the human embryo and foetus, autonomy and recognition, social implications, moral reasoning in applied ethics, legal regulations of assisted procreation, genetic diagnosis and gene therapy. The legal regulation paper evaluates the central laws and guidelines of European countries.

Part One
PROCREATION AND PARENTHOOD

A moral right to procreation? Assisted procreation and persons at risk of hereditary genetic diseases

Sheila A. M. McLean

The title of this chapter invites deconstruction. Contained in it are many and varied issues of moral and ethical concern. The most important of these concerns the use of the language of rights in relation to procreation. There is little doubt that the capacity to ascribe to an interest or a desire the title of a human right elevates the interest or desire to a level which is not generally given to other interests or desires. Human rights have been the centrepiece of political and personal struggle in the 20th Century and their importance cannot be underestimated. Reproductive rights—primarily to have access to effective contraception—formed the platform for the early women’s movement in the 19th Century, to be followed by more wide-ranging claims provoked by the apparent reluctance of some states to protect individuals from non-consensual intervention in their reproductive choices.¹ From the mass sterilisation programmes in the USA and Nazi Germany in the early part of this Century flowed an intense interest in the reproductive liberties of all citizens, which spawned the assertion that reproductive rights do in fact exist, and challenged legal systems to protect them.

1 A right to procreate?

However, only limited conclusions can be drawn from this. Although those seeking to use assisted reproductive techniques might well wish to claim that they have a right to do so, on analysis this claim is significantly flawed. While it may not always be inappropriate to use the language of rights in respect of reproduction, it is necessary to consider just how far that language can be stretched. Examination of the protection offered to reproductive decisions by the law may help in assessing precisely what kind of rights are in fact recognised.

An appropriate starting point for this analysis would be the United States whose policy of sterilising those thought unfit to procreate has been well documented, as has the legal position taken when such laws were challenged. Throughout the early part of this Century, crude and elementary genetic ‘knowledge’ was used as the basis for a programme of legislative and social reform designed to enhance the US gene pool. This eugenics policy was also adopted by, or found favour in, a number of other countries, such as the UK, France and some Scandinavian countries.² The intention was to maximise ‘good’ genes by encouraging those thought genetically fit to procreate and to reduce the spread of ‘bad’ genes by preventing those thought unfit from procreating. The latter group included black people, people who were ‘feeble minded’ and those who were recidivists. In numerous States, the superintendents of homes for the ‘feeble minded’ were given the authority to arrange for the sterilisation of inmates, sometimes using this as a prerequisite for release into the community, and often without even telling the individual what was happening to them (see Meyers 1971).

Perhaps surprisingly, given the existence of a written Constitution encapsulating a bill of rights, the law and the courts sided with the eugenicists even in the face of reasoned challenge. Indeed, some judges—like Oliver Wendell Holmes—generally remembered as libertarians, were prepared to hold these statutes to be constitutional. Perhaps the most famous example occurred in the case of Buck v Bell³ where Holmes equated policies of compulsory vaccination with the tying of fallopian tubes, and authorised the sterilisation of Carrie Buck declaring that ‘Three generations of imbeciles are enough.’⁴ However, although these policies were slow to die out in the US, by the 1930s and 40s, just as Nazi Germany was embarking on its mass sterilisation programmes, there appeared evidence of a change of approach in the USA. This change came about substantially from areas of law other than those specifically dealing with non-consensual sterilisation, but had an inevitable impact on it. In cases such as Griswold v Connecticut⁵ and Skinner v Oklahoma,⁶ courts were invited to address the private sexual behaviour of citizens and largely concluded that this was beyond the scope of public control. Creating a so-called privacy right from a cluster of constitutional rights, the law led the way in protecting the sexual and reproductive behaviour of US citizens, with the conclusion that sexual and procreative liberty was a right worthy of vindication.

The question, however, remains what kind of right was identified and protected? In effect, the use of privacy as a model served to generate a negative rather than a positive right. Thus, and this was of direct significance to those subject to possible non-consensual sterilisation, it was a right to exercise existing capacities; not the right to procreate as such but the right to do so if one chose. Further declarations of rights in this area, such as the Universal Declaration of Civil and Political Rights⁷ and the European Convention on Human Rights⁸ have also referred to procreative rights, but with an interesting slant. Each proclaim the right to marry and found a family, thus arguably constraining the use of rights language within the traditional nuclear family. However, these declarations also contain only a negative right. They presume that the capacity to procreate is present and seek to prevent others from interfering with personal liberty in choosing whether or not to procreate. They do not, and were not intended to, provide a general right to reproduce. For the unmarried, reproductive choice is protected by more general tenets of these declarations concerning the inviolability of the human being. Here again, the right is protective of existing capacity rather than proactively attempting to provide reproductive capacity.

2 Rights in assisted procreation?

With or without the involvement of the law, it seems, therefore, that at best those who are unable to conceive naturally may claim a legitimate interest in reproduction but no right to have their infertility circumvented by the application of modern technologies. The State, therefore, has no obligation to provide such services. However, this does not mean that there are no moral rights which might be asserted once the techniques are available. Although the infertile may have no positive claim that resources should be made available, they do have rights which they can expect to see vindicated once they are. Most obviously, perhaps, they have a right not to be discriminated against in the distribution of these services. However, even this right is subject to many constraints—so many, perhaps, that it is rendered of nugatory value.

In the UK at least, there is little provision of infertility services by the National Health Service—the result, no doubt, of political and economic decisions about priorities in health care. Thus, some people are already disenfranchised from gaining access to treatment as a result of financial constraints—arguably a form of economic discrimination. Equally, in husbanding resources, doctors act as moral gatekeepers,⁹ deciding which of those seeking treatment should receive it. This can lead to disbarment on a number of grounds such as lifestyle,¹⁰ suitability for parenting and age.¹¹ And, of course, although not yet so widely considered in the public arena, decisions may also be made on the basis of health status. Indeed, given that health status—at least in relation to self-induced illness—has already been used as a rationing tool in respect of, e.g., smokers, it would be surprising were it not also seen to be of possible relevance in assisted reproduction. This has particular implications for genetic conditions as science can now pinpoint the gene linked to many conditions in advance of pregnancy being established, and can predict with reasonable accuracy the risks posed to any potential child. This issue will be returned to shortly, but there is one other—seldom considered—matter which must be dealt with first.

There remains a considerable shortfall between diagnosis and treatment for genetic conditions.¹² For some, this gap seems likely to expand rather than reduce. It has, for example, been said that

Forced analysis of the human genome will cause the gap between diagnostic capacity and therapeutic failure to widen more than ever, we shall detect diseases with greater and greater precision, we shall learn to predict at the preclinical or prenatal stage without being able to do anything about the cause. (Schmidtke 1992, p. 209)

However, there is reason to hope that in the future therapy may be available for some of the most disabling conditions. Recent advances, for example in the treatment of cystic fibrosis, mean that the life expectancy of sufferers is considerably extended. With treatment, more of those unfortunate enough to have this genetic disorder can expect to survive to adulthood and may elect to parent. The fact that sufferers can now hope to live into adulthood is a tremendous clinical leap forward, but one which—in reproductive terms—may generate some additional ethical debate. Sufferers still have the gene which causes their illness and therefore are at risk of passing it on. In the knowledge of this, might not the gatekeepers of the technology decide that the infertile person with cystic fibrosis should not be offered infertility treatment because of the risk they pose to future children (and perhaps because their life expectancy may be reduced as a result of their condition)? Even given that embryos/fetuses with cystic fibrosis may be screened out pre-birth using the available screening tools, might it not be argued to be a waste of resources to supply assisted reproduction at all, given that these expensive tests would definitely have to be used, as opposed to the ‘normal’ infertile person where such tests may not be deemed necessary? And what of those with the gene for late onset genetic conditions, such as Huntington’s Disease or breast cancer? Are they to be excluded because of the risk to future generations?¹³ Although developments in gene therapy may eventually render this problem largely obsolete, we are a long way from that position yet and it must be taken seriously for the moment.

Similar problems of access may sarise in respect of those who carry the gene for a particular condition but who do not themselves suffer from it. Again, pre-implantation genetic diagnosis or prenatal screening may prevent the birth of a child suffering from the condition, but at what cost? Is the deliberate destruction of embryos or the termination of pregnancies less or more morally weighty than a decision not to offer treatment to those known to be at risk of passing on a genetic disorder? This may be an even more problematic question, as carrier status is often misunderstood. Skene, for example, notes that ‘In a pilot genetic screening project in Greece, carriers of the gene that causes sickle cell disease were stigmatised by their community and considered ineligible for marriage, except to other carriers’ (Skene 1991, p. 238). Of course, the outcome of this policy would not be the avoidance of genetic disease but rather its encouragement, as carriers only pose a risk where they procreate with fellow carriers.

This section can be summed up as reaching the conclusion that the infertile have no right to procreate but that they may have other rights in gaining access to assisted reproduction which centre on the right not to be discriminated against. ‘Old fashioned’ forms of discrimination may soon be supplemented by new ones, determined by genetic make-up in an eerie reminder of the eugenic policies described above. The fact that the science is more sophisticated in the current situation, is no substitute for reasoned debate about the extent to which the interests of the infertile should be served without prejudice about parenting capacity or the welfare of potential children.

3 Avoiding the birth of a genetically damaged child

It is now intended to turn to the other questions which lie at the heart of this discussion. The fact that an individual is at risk of passing on an inherited condition may have four broad outcomes. First, the person may eschew reproduction altogether, deeming the risk to be too great. Arguably, this choice will become a less popular option as the techniques to avoid or terminate affected pregnancies become more sophisticated and more widely available. Second, the person may—using the technique of IVF—request pre-implantation diagnosis. Third, the woman may be screened in the course of an established pregnancy with the possibility of termination should the embryo/fetus be affected. Or fourth, there may be the possibility of gene therapy prenatally or post birth. The first of these decisions is an entirely personal one, and is unlikely to be a matter adjudicated or commented on in the public arena. However, the last three options merit further consideration.

3.1 Pre-implantation genetic diagnosis

According to some commentators, the use of pre-implantation genetic diagnosis is still relatively uncommon,¹⁴ although it seems plausible that its use will continue to rise as more and more conditions can be detected. Although doubt has been expressed about this technique, for many it poses the ideal solution to potential problems. Rather than waiting until a pregnancy has been established, pre-implantation genetic diagnosis permits people undergoing IVF treatment the option of selecting only ‘healthy’ embryos in their bid to have children. Thus, embryos which have the gene which predisposes them to a particular condition can be discarded before conception allowing for the implantation of other embryos which are free from the gene. Not only does this provide elementary reassurance to the intending parent(s), it also avoids the need for pregnancy termination. For many, then, this is a morally less troubling situation than is abortion, since no pregnancy has been established and therefore no child has been created. However, as with all programmes designed to select the healthy from the unhealthy there are dilemmas surrounding the extent to which such selection should be undertaken. As was mentioned above, there are those for whom such a choice is still morally troublesome, making judgments as it does on the worth of a particular potential life, and raising questions about the entire enterprise of screening for genetic problems.¹⁵

Even more controversially, pre-implantation genetic diagnosis permits the screening out of conditions which are late onset—i.e., they will not affect the potential child until he or she is mature. Such conditions, whilst potentially very serious, need not prevent the individual from having a life which—for them—may be full of quality. For this reason alone, there is cause to be concerned about the decisions which can now confront intending parents as to whether or not to base their reproductive choice on what is currently available in therapeutic terms, or to take the gamble that by the time their potential child has reached maturity there will be therapy or even a cure available for the condition. Equally, there arises the problem of what to do with embryos which are carriers...

Table of contents

• Cover
• Half title
• Title Page
• Copyright Page
• List of Contributors
• preface
• Acknowledgements
• Ethics in human procreation: An analysis of some dilemmas
• Part One: Procreation and Parenthood
• Part Two: Moral Protection of the Human Embryo and Fetus
• Part Three: Autonomy and Recognition
• Part Four: Social Implications
• Part Five: Moral Reasoning in Applied Ethics
• Part Six: Legal Regulation of Assisted Procreation, Genetic Diagnosis and Gene Therapy
• Part Seven: Evaluation and Perspectives
• Annexe