The weak moral basis for strong PGD regulation

2   The weak moral basis for strong PGD regulation

Tom Campbell and Laura Cabrera

Introduction: the burden of proof

This critique of state regulation of pre-implantation genetic diagnosis (PGD) points to some weaknesses in the reasoning commonly used to support narrow and restrictive regulatory control. It sets out a presumptive case for broad reproductive rights with respect to PGD along the lines that prospective parents should be free to take such steps as they think fit to have what they regard as healthy and capable children, provided this does not cause undeniable harm, to these children or to other people, which is sufficiently serious to outweigh the presumptive case for reproductive freedom. Counter-arguments to this ‘liberal’ position are then argued to be flawed, or simply too weak to overcome the strong case for reproductive freedom with respect to PGD. A principal theme in the analysis is that moral considerations, which may reasonably be taken into account by those considering whether or not to avail themselves of the opportunities which PGD does, or may in the future, make available to them are erroneously used to make a case for legal restrictions which are based on no more than personal moral preferences, anxieties or dislikes.

‘PGD’ is adopted here as shorthand for the process of selecting embryos arising from in vitro fertilisation (IVF) for implantation in a woman and the intended development and birth of a child, the selection being done on the basis of scientific evidence relating to the genetic constitution of the embryos available for implantation. This distinguishes PGD from both prenatal diagnosis followed by the termination of the pregnancy, and from genetic modification of embryos.

Since the 1980s, PGD has been developed as an alternative option to more conventional and invasive prenatal diagnosis and allows couples to select an embryo on the basis of its genetic make-up and to commence a pregnancy knowing that their baby will not be affected by a specific unwanted genetic condition.1 Currently, the main indication for PGD is unsuccessful infertility treatment where there is no identifiable cause in the male or female partner, for couples where the female partner is of advanced reproductive age,2 for couples who have had more than three unsuccessful IVF cycles, and for couples who have had unexplained spontaneous miscarriage.3 Additionally, PGD is now commonly used for therapeutic purposes relating to inherited genetic conditions or chromosome abnormalities that are likely to give rise to serious illnesses or disabilities or premature death. PGD can be performed, in principle, for any genetic condition for which there is sufficient sequence information; thus the list of conditions for which PGD has been performed is growing rapidly.4 The possible uses of PGD include testing for susceptibility to diseases and to late-onset conditions,5 as well as sex-linked disorders.6 It can also be used for human leukocyte antigen (HLA) matching where an existing child of the family is affected by a disorder. It is worth stressing that while PGD reduces risk for the condition for which testing is done, it does not predict congenital malformations or diseases that do not have an identified genetic basis or are not the subject of the inquiry.7

PGD is not a routine procedure, as it is neither easy nor inexpensive. In addition to this, it also carries some hazard for the embryos involved.8 It is, however, a procedure that gives some couples a higher chance of a successful pregnancy than would be the case using only IVF, by facilitating selection of healthier embryos to be implanted, and it provides a less traumatic alternative to the termination of pregnancy where abnormalities have been detected following prenatal diagnosis. Further, although PGD still contributes only a small fraction to prenatal diagnosis generally,9 it has the potential to reduce the occurrence of many major chromosomal aberrations and monogenic diseases worldwide.

Nevertheless, while most people who have considered the matter agree that employing PGD for assisting IVF and for therapeutic screening of embryos is justifiable, there is some disquiet at the use of PGD for other purposes, such as sex selection and ‘enhancement’. The latter term refers to selection based on characteristics that go beyond the scope of securing average health. At present, sex selection is feasible, and sometimes practised; while enhancement generally speaking is not. However, with respect to enhancement, it is plausible to think that, as scientific knowledge and medical techniques develop, it will become possible to carry out genetic diagnoses relating to factors concerning behavioural and physical characteristics, which would enable embryo selection on the basis of a wide range of social, economic and aesthetic values.10 There is also the prospect of diagnosis leading on to genetic improvement through modifying the genetic makeup of pre-implantation embryos, but this goes beyond PGD as we have defined it.

The attitudinal ambivalence towards PGD, and the asymmetry between favourable public attitudes towards its use for avoiding the passing on of inherited diseases and the cautious and indeed sometimes hostile public reactions towards its use in seeking improvements on normal human capacities is reflected in the popular media and in the bioethical literature. Philosophers of considerable stature, such as Jurgen Habermas11 and Michael Sandel12 have expressed grave doubts about the wisdom and morality of procedures such as PGD, while others, such as Julian Savulescu13 and Peter Singer have argued that, on the contrary, parents should be permitted – even encouraged – to utilise such opportunities as are available to them to improve the quality of life for their children. Many commentators have noted that the new reproductive technologies give intending parents a wider range of choices, both preconception and prenatal, changing not only the way in which people view procreation and family, but also our conception of disease, prediction, diagnosis, prevention and what counts as desirable traits.14 As noted by McLean, ‘[n]o longer is the debate simply focused on whether or not people have rights to assistance in having children; the modern debate is also about what kind of children they may or should have’.15

The prospect of sex selection, which is permitted in some jurisdictions, and the anticipation of genetic enhancement through technological intervention, together with broader anxieties about the moral status of embryos and the manipulation of life, have given rise to extreme caution in some countries with respect to the legal regulation of PGD. PGD is prohibited in Ireland, Switzerland and Germany, and in some jurisdictions in which it is medically available, such as the UK, it has been restricted to narrowly defined therapeutic objectives, such as infertility and particular inherited genetic diseases, carried out for specific purposes in specially licensed facilities. On the other hand, in the United States, where the majority of clinics in the world using PGD operate, there is relatively little regulation.16

Regulative regimes such as that in the UK may be regarded as ‘bio-conservative’ in the sense that they are based on the assumption that alternatives to existing practice require specific and clear justification in terms of traditional medical or scientific assumptions. For the bio-conservative, the burden of proof is very much on those who seek to change the medical status quo with respect to the uses of PGD. ‘Bio-conservative’ arguments support policies that permit only strong therapeutic reasons for PGD and hold that PGD decisions should be based on medical rather than parental judgement within clearly defined regulative criteria for embryo development and implantation. For the bio-conservative, all further options should be proscribed.

A more radical conservative position on PGD regulation we term ‘naturalist’. Naturalism is a form of reactionary bio-conservatism which maintains that it is the duty of us all to accept the outcomes of natural reproductive acts, with the implication that there should be no legally available reproductive choices beyond engaging in natural procreative conduct, in extreme cases forbidding contraception and termination of pregnancies for any reason, and certainly outlawing PGD and other techniques that involve creating embryos, some of which are selected for implantation with the remainder being discarded.

In contrast, the term ‘bio-liberal’ may be applied to those who would permit a full range of medical and non-medical harms and benefits to be taken into consideration when selecting embryos for implantation after PGD, unless this is judged to be clearly not in the ‘best interests’ of the children to be born as a result of the procedure. Within these limits, bio-liberals, such as Savulescu, hold that the choice of whether or not to take advantage of PGD is ultimately a matter for intending parents, under procedures which are regulated only for the prevention of evident harms to the future children involved and the quality of the medical procedures in question. This is the position on the regulation of PGD which we identify as the default option; a position, which, we argue, ought to be adopted subject only to clear, convincing and major social considerations arising from the aggregative effects of predicted reproductive choices.

A more radical position is the one adopted by ‘transhumanists’. The transhumanist position shows a commitment to improving the genetically influenced capacities of the human individual and of the species to a point which can be said to change or transcend the human condition as we know it.17 Transhumanists encourage, and may even require, parents and society in general to improve the quality of life for future humans generally by using new technologies and techniques of genetic alteration as well as embryo selection. This would permit, so they argue, overcoming genetically inherent human limitations and the improvement of human features beyond what is currently species typical.

These working labels are used to classify the major regulatory positions that may be adopted towards PGD and the sort of normative considerations that underpin them. The framework of the discussion is that, given the present and potential benefits of PGD and taking the moral assumption that reproduction is a private matter, it is our view that there must be a strong moral case in favour of parental choice in such matters as child bearing. Further, there has to be a strong presumption against state regulation with a high evidentiary burden set to displace it; in particular, with regard to regulations that are not based on reasonable precaution relating to the prevention of undeniable harm to the children who are born as a result of such procedures, or the prevention of unacceptable social consequences arising from the cumulative effect of otherwise acceptable individual choices. The gist of the argument is that this burden of proof is not currently met by the generalised attitudes of disquiet and foreboding which have prompted bio-conservative PGD policies involving extensive legal prohibitions. Such considerations may properly guide individuals’ own beliefs as to whether they or other people ought to avail themselves of the opportunities that PGD may provide, but they are not appropriate when presented as bases for narrow and restrictive state policies. We may not like or approve of ‘pushy parents’ wanting ‘designer babies’ but this alone does not justify preventing them from carrying out their reproductive projects with the assistance of such advanced medical technology as they are able to access.

This chapter is not, therefore, an account of regulatory systems in place for PGD but a normative analysis of arguments for and against regulation of one sort or another. It identifies some of the ethical issues that arise in relation to PGD and examines some of the ethical reasons that are given for various types of regulatory regimes for PGD. It is not directly concerned with the moral choices facing potential parents and others involved in PGD; rather, it is directly concerned with the moral reasons for and against regulation. This highlights the gap between norms which are appropriate to guide individual moral choice and regulatory norms which, if adopted, restrict reproductive choices. Given the narrow limits and restrictions – which some people might regard as coercive – involved in bio-conservatism, the presumption is in favour of bio-liberalism. This is even more the case if it is held that reproductive choices are distinctively ‘private’ in that they bear primarily on the lives and well-being of the persons whose reproductive activities are at stake. This means distinguishing between what virtuous intending PGD parents and others involved would choose and what all such intending parents ought to be legally permitted, or indeed required, to choose. Moving too readily from reflecting on personal and social ideals to deciding on best regulatory practice, neglects to take into account the gap between private morality and public regulation.18

There are, of course, connections between the two types of question in that the same type of moral reasons, such as the reduction of suffering, may apply in both the private and the public domain. Such considerations do not, however, have the same moral weight in both private and public matters. The presumption of liberty – based on the moral significance of autonomy for moral agents, the existence of reasonable disagreement on values, and the danger of government power being abused – generates a similar, if not higher, standard of proof to justify reproductive regulation.

On the other hand, regulatory norms have to take into account the problem of aggregation. Thus, even morally acceptable choices for individual intending parents or medical practitioners may have cumulative consequences that require regulation, as with PGD embryo sex selection for non-clinical reasons, where the sum of individual choices may lead to substantial sex imbalances in a society. Here, however, the standard of proof is still high. Forbidding sex selection simply on the basis of a speculative prediction as to sex imbalance we would argue is an unacceptable intervention in reproductive freedom. Nevertheless, significant sex imbalance in a society is a reasonable basis for political intervention due to the degree of suffering that is known to arise where serious sex imbalances exist. What matters here is to distinguish such public policy considerations from the more nebulous concerns expressed in relation to PGD on the basis of such notions as ‘reverence for life’ and conceptions of ‘human dignity’, unless these are given clear and concrete meanings that can be subject to reasoned argument.

The right to reproduce

Insisting on the moral importance of preserving and developing reproductive rights does not mean that we must have recourse to any claimed deontological moral insights with respect to absolute and self-evident rights. Indeed, we view rights as part of a discourse that seeks to establish routine working social relationships, rather than to express overriding moral imperatives. The issue is to decide what rights we ought to establish, sustain and develop in our societies through social, political and legal recognition; not what abstract rights we are asserted to have in some pre-social or transcendental moral realm.

Nor can we simply extrapolate from existing reproductive rights, which in most countries involve at least the right not to be prevented from having children and the right to obtain such medical assistance in this matter as they can afford. Having such particular rights does not mean that there should be yet further reproductive rights, such as the right to an abortion, the right to paid parental leave or the right to be cloned. These are matters which require further and distinct moral debate in the light of the known facts and the morally relevant factors. Indeed, rights arguments can be suspect in situations of rapid technological change where major social consequences are involved. In these circumstances, rights are better seen as conclusions of complex arguments and not premises which represent compelling moral conclusions. In rapidly developing fields such as reproductive technology, the questions to be raised are about what rights we ought to have rather than what rights we do have.

Nevertheless, it is clearly relevant to have regard to the moral and factual considerations that have given rise to the acceptance of existing reproductive rights when we come to consider how such rights might be developed in the light of changed circumstances, whether technical, social or economic. Such reflection has to take into account the scope of the putative rights, their conditionality, the nature of the correlative duties that having a right impose on other people, and who it is that should be able to claim, waive or insist on the fulfilment of those duties. The conclusion that there should be a right or collection of rights delineating these parameters, if adopted by social consensus or legislation, establishes a strong, and perhaps an overriding, presumption that the prescribed right-holders are entitled to claim the benefits designated in the right without having to make a case beyond affirming that they have the right in question. Once the right is established, the likes and dislikes and the moral preferences of others are irrelevant to whether or not they are to be treated in accordance with their entitlement: hence, the importance of a rights discourse in a social and political culture. The relevance of rights language arises because of the presumptions it enshrines in favour of individual (and also collective) choice, the strength of the claims that can be made on the conduct of others, and the protection and benefit this can give to the interests of individuals (and groups) to whom the rights are prescribed.

The right to reproduce is deeply embedded in the history of human rights discourse for a number of reasons. (1) Reproduction is something very important to individual human beings. There is a major human interest in being a parent, given that parenthood is something which is of enormous significance to most people. (2) Reproduction is very important for the collectives in which people live and indeed for the human species as a whole. Self-evidently reproduction is a necessary condition for human survival19 which establishes a presumption against its limitation. (3) Some very nasty things have been done in the cause of tribal, racial and national dominance, and collective efforts to ‘improve’ the population through compulsory ‘eugenic’ programmes, including extermination and non-voluntary sterilisation.

As with rights in general, the right to reproduce (or reproductive autonomy) may be negative (either no law preventing reproduction and/or protection against the intervention of others), or positive (someone else has a duty to assist reproduction). Also, the right to reproduce may be specific with respect to such details as to how much reproduction (one, two or more children), or, like most statements of human rights, largely open-ended as to content. The right to reproduce may be to give birth to a child, or it may be to give birth to a child without defect or as perfect as it can be, or it may include rights to assistance in the nature and the nurture of the children born. In these latter cases, as McLean points out, ‘[t]hese reproductive rights are rights within reproduction rather than rights to reproduce’.20 On the other hand, as she adds, ‘the protection offered by rights language is first and foremost the right not to have existing capacities to reproduce interfered with by others (particularly the state)’.21

Choice between these possible rights formulations, if we are engaging in ethical discussion, cannot be read off from the abstract or existing ‘right to reproduce’. What have to be explored are the reasons for and against having certain sorts or formulations of a right to reproduce. Seeing reproductive autonomy as an intrinsic right (that is a right that is grounded in the act itself rather than its consequences beyond the right-holder) and assuming for the moment the interest theory of rights – whereby rights are grounded inter alia on the moral significance of the interests in question – means that reproductive autonomy has to be based on the interests of the right-holder. Thus, we can say that there is a very powerful moral reason for ascribing a right to reproduce in the sense of ‘to have children’. We only need to contemplate the misery that the denial of that opportunity creates to justify this conclusion. So, there is a good basis for a strong prima facie case for the negative right to reproduce. Moreover, given the misery associated with not having the capacity to be a parent, we can see a similar argument for a positive right to reproduce; the only significant difference being the question of who has to bear the cost of or see to facilitating childbirth.

Extending this line of thought to circumstances relating to PGD, we can note that human beings have a major interest in their children not suffering serious illness, disability or premature death. Thus, we can readily move on to accept that there should be a right for potential parents to take such measures as are necessary to prevent these eventualities, and even to be provided with such help as is available to that end, depending on material and technical resources and the financial and opportunity costs deriving from other human needs.

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