Subsidizing PGD: The Moral Case for Funding Genetic Selection

In July 2015, the biotechnology company Genea lodged an application with the Australian Department of Health to list the technology preimplantation genetic diagnosis (PGD) on the Medicare Benefits Schedule. If successful, this move would see PGD become partially or fully subsidized by the Australian federal government. This follows many public calls to improve access to PGD (Change.org 2016). Many begin like this:

In my late 20s it was discovered that I had a dominant genetic condition, this means that I have a 50% chance of passing on my condition to any children I have. After a follow up with a Genetic Counsellor I was advised that my options to prevent passing this on were the following: 1. Choose not to have children. 2. Choose to do chorionic villus sampling (CVS) early in the second trimester of a naturally conceived pregnancy and have a termination based on the result. 3. To do IVF and use pre-implantation genetic diagnosis (PGD) to screen embryos and then only use the embryos that test negative for the condition (Change.org 2017).

Option three is inaccessible to many Australians, because of its high cost; in addition to the out-of-pocket expenses associated with in vitro fertilization (IVF) (approximately A$3000–4000), PGD costs on average an additional A$6250 for an average cycle (Elhassen et al. 2015). In this paper we argue that there is a strong moral case for subsidized PGD. In section two, we outline the moral considerations in favour of subsidizing PGD. We show that there are reasons of autonomy, beneficence, and justice that support making PGD fully subsidized. In section three, we examine some of the objections to subsidizing PGD, including that it harms disabled individuals, encourages coercion, and will lead to designer babies. We argue these considerations ultimately fail and that the case in favour of subsidizing PGD is overwhelming. We begin by providing background to the technology itself.

First developed in 1990 (Handyside et al. 1990), preimplantation genetic diagnosis allows the detection of genetic abnormalities in embryos produced through IVF. Embryo biopsy conducted in the first six days allows deoxyribonucleic acid (DNA) to be tested for the presence or absence of specific genetic sequences. In many countries, including Australia, the United Kingdom, and Canada, PGD is available to parents whose children are at risk of inherited genetic diseases, such as cystic fibrosis or Huntington’s disease. An embryo that has been detected as containing a detrimental mutation is generally not eligible for transfer and is discarded.

PGD has been shown to be a safe and effective procedure (Chang et al. 2016) that prevents a wide range of diseases.¹ Whilst PGD traditionally looked for specific abnormalities determined by parental analysis, modern techniques look at entire genomes for a wide array of mutations.

Currently, the Australian government, via its publicly funded healthcare system “Medicare”, provides a financial rebate of A$4800–5300 per IVF cycle (IVF Australia 2017) to couples undergoing IVF treatment. PGD is not included and, consequently, couples are required to fully finance the technology. An IVF cycle in Australia costs upwards of A$9000 (IVF Australia 2017), with PGD charged at approximately A$2500 for the first embryo biopsied and A$750 for each additional embryo (Elhassen et al. 2015). The use of genetic testing (including both PGD and preimplantation genetic screening) continues to increase in Australia, up 28.6 per cent from 2015 to 2016, being utilized in 9.16 per cent of IVF cycles (Fitzgerald et al. 2018).

Autonomy supports the values of sovereignty and self-determination (Enoch 2017). These are particularly important principles in medicine. Patients have full sovereignty over their bodies—and their bodies can only justifiably be interfered with (be cut, injected with substances, etc.) if they validly consent to waiving those rights. Another aspect of autonomy is self-determination, which describes the rights of individuals to be the authors of their lives. Decision about weighty medical procedures, with different costs and benefits, should prima facie be left up to the individual to make in accordance with their own preferences and values.

Recently, philosophers have widened the scope of individual autonomy to include reproduction. Considerations of self-determination seem naturally to apply to decisions about procreation. Procreative decisions often have a significant impact on one’s life. If people have a prima facie right to be the author of their own lives, we ought to give parents wide scope to choose how and when they procreate, which extends to the use of reproductive technologies like PGD. The late political philosopher Ronald Dworkin was the first to describe this right to “procreative autonomy”:

The right of procreative autonomy has an important place…in Western political culture more generally. The most important feature of that culture is a belief [in] individual human dignity: that people have the moral right—and the moral responsibility—to confront the most fundamental questions about the meaning and value of their own lives for themselves, answering to their own consciences and convictions … The principle of procreative autonomy, in a broad sense, is embedded in any genuinely democratic culture. (Dworkin 2011)

The idea of procreative autonomy has been further developed in the work of John Harris (2000) and John Robertson (2003).

Having a child with a serious disability would significantly affect how one’s life would go. A concern for self-determination suggests people who are having a child should, as much as possible, be free to influence whether or not that child has a disability. Currently the cost of PGD is a barrier to this freedom. Considerations of autonomy therefore favour making PGD publicly funded.

This line of thinking brings up considerations of the limits of parental autonomy. What if parents want a child with certain characteristics, including a disability; should they be free to make this choice? Such considerations have been discussed at length elsewhere (Harris 2010). We will put this issue aside for now, taking the position that in such cases consideration of parental autonomy does in fact count in favour of free parental choice. However, in many controversial cases, there are other factors which count against autonomy (harm to the child, harm to society) that are absent in the use of PGD to prevent disease. Even the staunchest critics of genetic selection (Habermas 2003; Sandel 2004) are in favour of selection against diseases.

Beneficence is one of the foundations on which the practices of both parenthood and medicine are established. The key notion behind beneficence is that of benefit. Beneficence demands parents and professionals act in the best interests of their children and patients.

One concern occasionally raised is that subsidizing PGD would lead to an increase in the number of IVF cycles undertaken by patients. We are not advocating for the exclusive use of IVF services in preference to natural conception; the public funding of PGD is to be used for couples already requiring or utilizing IVF. Furthermore, irrespective of the use of PGD, selection of embryos is still conducted by various techniques, most commonly based on the morphological appearance and characteristics of embryos. PGD seeks to improve the selection process, by categorically grading an embryo based on genetic normality. By selecting “superior” embryos, PGD is likely to improve the chance of pregnancy success, as poor-quality embryos have an increased chance of uterine transfer failure or miscarriage; the improved time to live birth rates will decrease the requirement for additional IVF cycles to achieve a live birth. Given the significant out-of-pocket expense of accessing IVF services, it is unlikely that publicly funding PGD will cause a marked increase in couples abandoning natural conception techniques to utilize IVF. Even if free PGD were to increase the number of IVF cycles, this would be unproblematic as long as couples were adequately informed of the risks and overall the procedure remained cost-effective relative to fewer IVF cycles.

Discarding embryos based on their genetic composition has caused concern amongst some authors (Kass 2003; Sandel 2004). They feel that to reject an embryo is to reject a child. Numerous discussions have focused on the debate regarding at which stage of development a group of cells can be classified as human and therefore have some or all human rights assigned. One extreme version of this view holds that an embryo enjoys full moral protection against destruction.

This obviously prohibits PGD entirely, but also raises ethical doubts about IVF and other commonly accepted practices.

In those jurisdictions where multiple embryos are produced as a part of IVF, one must conclude that an embryo is not yet a person. IVF typically seeks to harvest multiple oocytes, some of which may never be used; some will fail fertilization, some embryos will never develop sufficiently to be transferred, and others may be surplus to requirements. One must therefore accept that disposal of embryos is a component of IVF treatment. Those that have accepted this but continue to oppose the selection of embryos based on certain traits should be reminded of the IVF process. Embryos with low morphological (developmental) ratings are often removed as they have an increased likelihood of failure. Therefore, all embryos undergo some form of selection based on their traits, be they morphological, developmental, or in the case of PGD, genetic.

In some jurisdictions, such as Germany, only one embryo is produced. There it would be consistent to reject PGD (as Germans do). But where PGD is acceptable, it should be publicly subsidized because of its significant benefits and for reasons of distributive justice.

It must also be recognized that other accepted practices also increase the number of embryos not carried to term, most notably contraceptive measures. Within most countries, contraception is a widely established and advocated for notion. It should therefore be accepted that for most individuals in a democratic society, the moral status of an embryo does not prevent the use and public funding of PGD.

One of the premier concerns elicited when discussing the selection of genes is the notion of “designer babies”—babies chosen for particular characteristics. These concerns are often linked to worries over eugenics, and specifically the Nazi campaign to breed blue-eyed, blonde-haired children (Appel 2012). As Leslie Whestine writes “designer babies and genetic engineering … provoke our collective anxieties more than in any other scientific discipline” (2015, p547).

This “slippery slope” argument suggests that PGD will soon be involved in selecting aesthetic qualities which have no impact on health and well-being. It must be recognized that the current legal framework surrounding PGD in Australia, the United Kingdom, and other jurisdictions regulating IVF does not allow such selection and that unless society allows governments to alter these laws, PGD will never be used for such purposes. The argument we are making in this paper refers to the public funding of already-approved PGD services; there is to be no alteration to the accepted conditions, simply an amendment to PGD’s financial funding. In its report, the MSAC discusses the implementation of a “gate-keeper function,” to ensure the use of publicly funded PGD services only for conditions with an “acceptable evidence of clinical benefit and cost-effectiveness” (Medical Services Advisory Committee 2017, 3). We are strong advocates for the continued role of and supervision by oversight committees, such as Australia’s MSAC or the United Kingdom’s Human Fertilisation and Embryology Authority, whose responsibility it will be to ensure PGD is only used for approved medical conditions. Therefore, whilst the notion of “designer babies” is commonly used by the media to evoke an emotional response from audiences, if society holds governments accountable for any changes to PGD laws, it is unlikely that PGD will be used in such a manner.

Some authors have argued that to prevent the transfer of an embryo destined to be disabled is to label the lives of all disabled individuals as worthless. Helen Watt states that any attempt by PGD to limit the natural creation of disabled embryos is to “send out a highly demoralizing message to born disabled people” (2004, p57 ). This, sometimes called the expressivist argument (Hofmann 2017), puts the case that subsidizing PGD would increase discrimination against those with disabilities.

There is a fear that reaffirming these genetic disorders as not “normal” will strengthen prejudice towards disabled individuals. This should not be the case, and with appropriate education and support, PGD can be used to reduce the incidence of such congenital disabilities whilst still supporting individuals and families to live meaningful and fulfilling lives. As Watt (2004, p57) herself notes, disabled individuals “are limited in certain respects,” and we doubt most patients would wish their medical condition or disability on a future child. The fact that “having a child with disabilities can be of great value to the parents” (Watt 2004, p59) is undoubtedly true. It is unlikely, however, that the majority of parents fall pregnant with the desire to have a disabled child. This is the value of PGD: it seeks to prevent future cases, not to undermine the care and treatment of current ones. Indeed, MSAC’s report to the government clearly notes “that the purpose of PGD testing is not to reduce the number of individuals deemed costly to society, nor to degrade society’s willingness to care for those born with a genetic abnormality” (Medical Services Advisory Committee 2017, 1). Society strives to find a cure for cancer, not to inform cancer patients that they are insignificant, but rather to prevent future cases from ever developing. As Petersen writes, “slippery slope arguments against PGD tend to focus only on possible harms to disabled persons … [ignoring] the increase in welfare of other individuals that might be gained by PGD” (2005, p233).

Another way in which subsidizing PGD could negatively impact disabled individuals is by reducing the total number of disabled people. Consider people who use wheelchairs: whilst the prevalence is high, governments and societies have a strong impetus to ensure buildings have wheelchair ramps and appropriate access services. As the prevalence of such individuals decreases, however, the concern is that society will no longer justify the additional requirements (financial, spatial, etc.) required to facilitate wheelchairs. However, for other disabilities, the public’s moral incentive to assist disabled individuals will remain unchanged; if this is the case, services should continue to be provided as needed. Indeed, services may also improve proportionally to the decreased incidence of disabilities; Gyngell and Douglas (2018) consider the case of in-home nursing care: with a reduction in demand, the committed financial expenditure will increase per person, thereby allowing improved services and access. Furthermore, humans will continue to have accidents and diseases which render them, in this case, unable to mobilize without a wheelchair, thereby ensuring appropriate services continue to be delivered. PGD thus should not necessarily be seen as a threat to disabled individuals, as long as society retains its moral incentive to care for people living with disabilities.

Juth expresses concern that positive selection against disabilities and other medical conditions will create societal bias in which “having a disabled child is gradually made so unattractive that the use of PGD becomes the only bearable choice for many couples” (2012, p5). It must be acknowledged that almost every technology has the potential to create poor consequences, but that this is not a reason to abandon the technology (Petersen 2005). We believe measures can be undertaken to prevent this from occurring, should society find itself heading down this path. Firstly, even compulsory IVF and PGD would not entirely eliminate disability, there will still be disabled children through accidents, in utero exposure to toxins, and so on. Secondly, as we have previously stated, for the well-being of the future child, we should want and encourage parents to undergo PGD to reduce the incidence of disability.

Concerns have been raised regarding the impact of publicly funding PGD services with regards to strength of the social and moral obligations it places on aspiring parents and the opportunity for coercion.

Watt states that good parenthood requires “unconditional acceptance” and that “parents who make their love and care conditional on their child displaying certain features [can be] seen as unparental” (2004, p52). We feel a distinction must be made; parents should accept their offspring when events beyond their control occur: for example, a child who becomes disabled following a car accident or one who develops cancer. However, if the parents have the ability to influence the outcome and they choose not to, then they should be held morally accountable for their inaction. In the context of disability or cancer, the public would not excuse a parent who failed to prevent their offspring getting into an accident or being exposed to toxic material. They may even be criminally liable. A society that has the opportunity to test for disability or a cancer predisposition but fails to do so due to a lack of funding should bear some responsibility for the suffering caused. Savulescu and Kahane note that “most people will agree that there is a moral defect in parents who intend to conceive a child but are indifferent to whether their future child will be born with the potential for a good life” (2009, p276). Returning to Feinberg’s concept, by not testing for genetic abnormalities, parents may limit the future possibilities experienced by their offspring (1980). Parents “have a duty to perform [an action such as PGD] with a high degree of care and in the best interest of the resulting child” (Malek and Daar 2012, p8).

Nonetheless, we might think that public funding for PGD might increase the tendency for coercion. However, it is important for society to remember that coercion is inappropriate and is unacceptable in other areas of healthcare. Public funding of immunization programs and prenatal trisomy screening provide similar scenarios to subsidizing PGD. We do not think it is inappropriate to subsidize immunization just because of the potential for coercion. Coercion should be resisted but that is a separate issue.

Moreover, it is not obvious that coercion is always wrong. Laws are coercive. Malek and Daar (2012, p7) neatly describe the legal aspects of PGD technology . They comment that parents who undertake IVF may be legally liable should they refuse to undergo PGD “in the context of its harm-preventing benefit.” This would be especially applicable to couples with a known risk of transmitting a genetic condition. The question then arises as to which party pursues legal action—can a child, limited by illness or disability, seek legal retribution for their parents’ inaction? Is the physician or even the state liable for failing to impose mandatory PGD testing in such circumstances? We would suggest one solution is to make PGD “free” for IVF patients; this allows all parents to access PGD services and is likely to reduce the proportion of patients not undergoing PGD testing. One could argue parents are still able to refuse this opportunity: this could only be negated by mandating IVF patients undergo PGD. Malek and Daar (2012, p7) suggest current laws clearly require parents “to act (for example, by providing necessary food and shelter) and to refrain from acting (by not intentionally placing a child in harm’s way).” They predict that as the laws are refined in relation to IVF, a parental obligation to “maximize the well-being of their future offspring by all reasonable means” (Malek and Daar 2012, p7) will be imposed on parents, thereby almost mandating the use of PGD. Whilst parental autonomy is a highly regarded legal status, most Western legal systems will disregard this principle to maintain the best interests of the child. Consider for example the regularly cited cases whereby Jehovah’s Witness parents refuse life-saving blood transfusions for their child; in the majority of circumstances, “the child’s welfare supersedes personal freedoms” (Malek and Daar 2012, 7). Adam Zimmerman (2009) writes that such laws are strictly utilitarian, in which the future well-being of the child, and hence society, surpass any one individual’s agency. The purposes of this paper is not to investigate the framework surrounding IVF and laws regarding embryos, fetuses, and children; for a summary discussion in the context of the American legal system, we refer readers to Malek and Daar (2012). However, the above discussion highlights the benefit taxpayer funding of PGD services would bring to any legal adjudication; were PGD to be widely and freely available, this would remove significant potential justifications for parents choosing not to undergo testing. Whilst these legal precedents may again raise concerns of coercion, a decision must be reached on whether a risk of coercion is acceptable to allow PGD to benefit significant numbers of future children.