Jackie Leach Scully argues that respect for equality and diversity, and not just respect for the parental autonomy and the welfare of the future child, should inform policies governing the use of preimplantation genetic diagnosis.
The Ethics Committee of the American Society for Reproductive Medicine recently published an Opinion on “Transferring embryos with genetic anomalies detected in preimplantation testing.” The Opinion aims to help providers deal with the rare but ethically difficult situation when prospective parents want to transfer embryos with a known genetic anomaly that is linked to a serious health-affecting disorder.
Preimplantation genetic diagnosis (PGD) is typically used by couples to avoid transferring a genetic anomaly to their children. Using PGD to ensure the transfer of a genetic anomaly, rather than avoid it, seems deeply counter-intuitive. Yet, there are several scenarios where this might happen. For example, this might be a reasonable option when the only transferable embryos carry the genetic anomaly, or when the embryos carry a different, but potentially just as serious, genetic variation.
The most problematic cases, however, occur when prospective parents express an actual preference for children with ‘their’ genetic condition – an anomalous condition that others perceive in negative terms. It’s an uncommon situation, but despite its rarity steps have been taken to block attempts by prospective parents to ‘choose disability’, such as the UK’s legislation on reproductive medicine. The legislation prohibits the use of an embryo (or gamete, in the case of egg and sperm donation) that has a genetic anomaly “involving a significant risk” of “a serious physical or mental disability, serious illness, or a serious medical condition” unless there are no other unaffected embryos or gametes that could be used instead.
Bioethics has devoted a disproportionate amount of attention to the question of ‘choosing disability.’ Irrespective of the small number of such cases, the possibility of choosing disability highlights the often unchallenged assumption that there is societal consensus about what constitutes normality, abnormality, and disability.
The American Society for Reproductive Medicine’s Opinion discusses the ethical principles that come into play, including parental reproductive autonomy, protecting the child’s welfare, and the right of PGD providers to act according to their conscience. It recognizes that these ethical problematic cases are complicated by the difficulty of predicting clinical outcomes of DNA sequence anomalies, and also of distinguishing between disease and disability.
However, in the Opinion and elsewhere, consideration of the possible reasons why prospective parents with a particular impairment might wish to transfer embryos with genes associated with having the same impairment, generally fails to go beyond the suggestion that potential parents wish to raise children with the same characteristics. While many people might agree that this is an understandable wish (one of the reasons we want genetically-related children is so that they resemble us, having the same hair colour or the family nose), the plain desire to ‘have a child like me’ is not important enough to override the strong obligation to protect a child from the harm of a preventable disability.
This perspective misses two important points.
First, in the exemplar conditions that get mentioned (deafness and dwarfism), many affected people do not perceive their embodiment as a serious disability. A person born deaf or with restricted growth is likely to experience this as their normality, and so might believe that this condition would be normal for their child too. This is a different point from just wanting to ‘have a child like me.’ As is now widely recognized, audiological deafness has generated a flourishing culture that is valued by, and taken as normal by, those experiencing it. This means that prospective parents making this choice are not ‘intentionally diminishing’ their future children since they may not see deafness, or restricted growth (the examples given) as a diminishment.
Second, it’s important to be clear that disabled people arguing in favour of equality in reproductive medicine aren’t doing so because they necessarily want to ensure that their children are born with their bodily variation. Rather, they want to have the right, if using PGD, to opt against having to ensure that their children don’t have the variation. The two situations aren’t mirror images of each other.
The current reality is that most fertile disabled people do not access reproductive medicine to have children, so for them, the issue doesn’t arise. Nevertheless, the issue does arise when prospective parents using IVF use preimplantation genetic screening to evaluate the overall viability of their embryos and to maximize their chances of successful transfer. In doing so, genetic anomalies may be detected.
The Opinion makes it clear that there are good and legitimate arguments both to accede to, and to reject, a request the transfer embryos with known genetic conditions. In these situations, the various perspectives that inform prospective parents’ choices should be fully understood and inform policy frameworks. It is essential that respect for equality and diversity are taken into consideration by policy makers, alongside the more familiar principles of parental autonomy and the welfare of the future child.
Jackie Leach Scully is Professor of Social Ethics and Bioethics, and Executive Director of the Policy, Ethics and Life Sciences Research Centre, Newcastle University, United Kingdom. @JLSbioethics