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.
As discussed in section 2.1, were PGD to be publicly funded, parents would benefit by having more reproductive options. The earliest diagnostic confirmation of genetic abnormalities currently available via antenatal testing is at or beyond eleven weeks’ gestation. At this stage the mother has carried her child for over two months and may have created a psychological and emotional bond. Were a couple to be informed that their fetus had some form of abnormality, abortion would be a much harder decision to make, and the procedure more invasive. Compare this to PGD, which can provide a diagnosis prior to the embryo being transferred into the mother’s uterus; a decision to discard the embryo at this stage should, theoretically, be much easier. Furthermore, a greater percentage of individuals would believe a two or three-month old fetus is a moral person than would believe the same of a five-day-old embryo.
Imagine a couple—Jane and Jay—are both carriers of a mutation that causes spinal muscular atrophy (SMA), a genetic condition that normally causes death in the first two years of life. Jane and Jay undergo IVF and PGD and have a healthy child, Del.
Has Del benefited from Jane and Jay’s decision to undergo PGD? On some views of benefit, an action can only benefit someone “if it makes her better off in some respect than she would have been, had the action not been performed” (Gardner 2015, p329).Footnote 2 Imagine if Jane and Jay do not conceive through IVF. Does this leave Del in a worse state? No, rather Del will not exist at all. On this view, Del doesn’t benefit from the action of her parents—for there is no scenario that Del exists and has SMA.
However, there are different ways to understand the requirements of beneficence (Gardner 2015). We could concede that PGD does not benefit Del, but rather benefits Jane and Jay’s “next child”—whoever that particular person may be (Parfit 2017). The relevant comparison to make is between Del’s well-being and the well-being of the child Jane and Jerry would have had, had they not engaged in PGD. In cases where that next child would have had SMA, PGD confers a significant benefit.
This is another way of saying that PGD confers an impersonal, rather than a person-affecting benefit. That we should understand beneficence in such an impersonal way has long been argued in bioethics. Savulescu’s (2001, p415) principle of procreative beneficence states “couples (or single reproducers) should select the child, of the possible children they could have, who is expected to have the best life, or at least as good a life as the others, based on the relevant, available information.” This appeals to the idea that parents have obligations to benefit their children in general—regardless of their identity.
Take the example of the Zika virus. If a woman falls pregnant during a Zika infection, it is highly likely the baby will be born with microcephaly. During the Zika outbreak, many health systems recommended that women who had visited Zika affected areas wait at least three months to conceive. In doing so, they were effectively recommending that women avoid the birth of infants predisposed to disability and instead aim to conceive clinically “normal” infants. Such advice supports procreative beneficence. Indeed, society also encourages couples to select the appropriate timing to have a child in relation to other factors: finances, careers, housing, relationship stability, and parental age. This reflects that we generally do not understand benefit in a narrow person-affecting sense
If we understand beneficence in a broad, impersonal way, then it is clear beneficence strongly favours making PGD widely available.
The Basis of PGD Justice
The Roman lawyer Cicero gives one of the earliest definitions of justice as “the virtue which assigns to each his due” (Cicero 1933, p321). This broad definition still captures the core concerns of justice today. While justice encompasses many elements of ethics and law—such as the punishment of crimes, the distribution of resources, and the relationship between society and individuals—it fundamentally represents a concern for giving people what they are “due.” In moral philosophy, justice is seen as a particularly powerful value. If something is labelled as “unjust”—be it an institution, policy or individual action—this generates a strong, if not decisive, reason to reject it (Miller 2017).
The medical resources required for PGD—drugs, a specialist’s time, and so on— are limited. The demand for these resources outstrips their availability. This raises the question of how to allocate them in a way that “assigns each their due.”
The current funding arrangement, whereby IVF is subsidized but PGD services receive no rebate via Medicare, ensures PGD continues to be available only to relatively well-off individuals. Access and utilization of IVF services is greater in countries with a higher gross domestic product per capita (Zegers-Hochschild 2006), and it has been noted that only in countries with minimal out-of-pocket expenses (i.e. significant and sufficient government subsidies) does the utilization of IVF services approximate demand (Adamson 2009). A comparison can be made to the healthcare funding arrangement seen in the United States of America, where there is no national universal healthcare system; currently, PGD receives no governmental support or subsidies, thereby ensuring it remains segregated from lower socioeconomic couples.
If PGD were to become subsidized, would this promote justice? There are several different theories of distributive justice which give different answers to the question of how we should distribute a limited resource. Strict egalitarianism holds that each member of society receives exactly the same proportion of the distributed goods. John Rawls “maximin” theory holds that inequalities are morally permissible as long as they improve the level of the least advantaged in society (Rawls, 1971) “Maximin” is a type of theory of prioritarianism—a group of theories which argue that when distributing scant resources, priority should be given to those who are the worst off.
Another version of prioritarianism is “sufficientarianism,” according to which priority is to be given to the worst off, but only when they are below some minimum threshold. In “Rights, Utility and Universalization,” John Mackie defends a version of sufficientarianism under which everyone has a right to a fair go (1984). According to a maximizing version of giving people a “fair go,” we should give as many people as possible a decent chance of having a good life. This is a plausible, common-sense principle of justice. A fair go entails that each person has a legitimate claim to a sufficient quality of life. If everyone has a sufficient level of well-being, distribution should be performed according to a utilitarian principle of maximizing benefits. According to the Right to a Fair Go principle, or sufficientarianism generally, medical resources should be distributed to maximize the number of people that have a sufficient quality of life. If two distributions both result in the same number of people having a sufficient quality of life, whichever one maximizes overall well-being should be preferred.
All interpretations can be utilized in arguing a case for the public funding of PGD services. It is desirable to have access to PGD services as some people want to avoid their children having serious disabilities. Currently, however, financial barriers mean that only the wealthy have access to it. Given the impact an unwell or disabled child can have on the financial status of a family, the argument for taxpayer funding of PGD is strengthened amongst low socioeconomic families. A lack of access to PGD could make people even less well-off and drop them below the minimum threshold for having a fair go.
Most importantly, justice requires making PGD free in the following way. All resources, including healthcare resources, are limited. Justice requires that these be used to bring about as much benefit to people as possible (utilitarianism) or to bring as many people above a sufficient threshold (sufficientarianism). The healthcare of people with genetic disorders is significant. By avoiding genetic disorders, these resources are made available to other people requiring healthcare. These resources could be significant, as we will now argue, and thus justice requires making PGD free.
The growing health expenditure experienced by many countries, with the direct pressure on the government’s health budget, delivers an ongoing challenge with regards to the ability to fund all healthcare demands. The public funding of PGD may seem like an additional burden on these limited funds. The Australian Government’s Medical Services Advisory Committee (MSAC), tasked with reviewing Genea’s application, notes that the financial estimates of the net cost to the budget for subsidizing PGD to be A$3.9 million in year one and A$6.8 million in year five (Medical Services Advisory Committee 2017), a not-insignificant value.
However, while publicly funding PGD will represent a significant upfront cost for health systems, these costs will be recouped in the long term. By reducing the frequency of deleterious genetic conditions, PGD will decrease the demand placed on the health budget by such diseases. The increased availability of funding can be utilized in other sectors of healthcare, with the aim of further improving the justice and equality of all members of the community.
As part of Genea’s submission to MSAC, they were asked to provide an economic evaluation of subsidizing PGD. The incremental cost per unaffected live birth following PGD was calculated as A$32,727 (taking into account both the cost of PGD and the success rate of IVF); however, this is offset by the mean lifetime health system cost of many diseases (for example, A$335,000 for an individual with cystic fibrosis), signifying a significant saving in healthcare expenditure (Medical Services Advisory Committee 2017). Whilst the data from this one condition may not be easily extrapolated to incorporate genetic predispositions for conditions such as cancer, at its least it serves to underline the call for PGD to be publicly funded for certain genetic abnormalities.
As many genetic mutations demand increased healthcare access in the first years of life, some of the financial benefits of publicly funding PGD should be quickly realized. We hypothesize that the harm produced by redistributing funds towards subsidizing PGD (and thus depriving other areas of the budget of this money) will be minor compared to the significant benefit a reduction in genetic diseases can provide to the healthcare budget in the long term. Indeed, MSAC acknowledge that “PGD was likely to be cost-effective or cost-saving … in conditions with high lifetime costs,” and went on to recommend that PGD be publicly funded in Australia (Medical Services Advisory Committee 2017, 2). This argument is akin to the aim of preventative medicine: addressing causes of ill health prior to the development of symptoms (at a cost to the current healthcare budget) and thereby reducing future costs. Governments are all too often accused of short-term, electoral-cycle thinking; the short-term harms of subsidizing PGD should be acknowledged but set aside in favour of the long-term benefits.
As an example of another condition with a strong case for subsidized testing through PGD, take Gaucher's disease (Gyngell and Savulescu. 2018). It is caused by a genetic defect which results in the reduction or absence of the enzyme glucocerebrosidase. This can damage the liver, spleen, lungs, and kidneys, and can be lethal. Fortunately, there is an effective treatment. A modified version of the enzyme can be produced in the laboratory and administered directly into a patient’s blood stream.
Many will say that as we already have a treatment for diseases like Gaucher’s disease, we do not need genetic selection. However, the cost of producing the replacement enzyme is very high, with the total cost of treating each patient with Gaucher's disease ranging between US$200,000 and US$400,000 per year per person (van Dussen et al. 2014). Over a patient’s lifetime the cost is approximately US$9 million. This is many times above the cost effectiveness threshold used by many public health systems, but in many cases it is still covered as an “orphan” drug.
In public health systems with limited resources, an expensive therapy has the opportunity cost of preventing the treatment of someone else's disease. Justice requires we choose the most cost-effective option. Genetic selection could potentially prevent Gaucher's disease in one cycle. The cost would possibly be in the range A$10,0000 in total per person, compared with A$9 million lifetime of treatment through enzyme replacement. IVF and PGD would increase the efficiency of public health systems and allow more diseases to be prevented. This would disproportionately benefit those in lower socio-economic groups who rely more on public health systems. This is another way subsidizing PGD can remedy existing injustices.