By Dominic Wilkinson @Neonatalethics
Should parents undertake prenatal testing? Is there a moral reason to prevent disability in your future child through embryo selection?
In a special Moral Philosophy Seminar yesterday evening, Professor Tom Shakespeare, from the University of East Anglia, gave a nuanced and multi-faceted argument against the arguments advanced by Julian Savulescu and Jeff McMahan in favour of embryo selection. In particular he attacked Julian’s Principle of Procreative Beneficence (PB)
Procreative Beneficence (shortened version): when considering different possible children, based on relevant available information, couples should select the child who is expected to have the best life*
Tom rejected some arguments against PB. For example, he was keen to emphasise that he supported parents right to choose not to continue a pregnancy where the fetus would have significant disability. He does not feel that such decisions necessarily express the view that lives with disability are not worth living (the ‘expressivist’ objection against abortion or embryo selection). He also distanced himself from the view that disabilities are a ‘mere difference’, and simply a neutral characteristic – like hair or eye colour.
However, Shakespeare also gave a strong argument against there being a moral duty for parents to select embryos without a genetic marker for disability. He cited evidence that many disabled individuals (including some with severe cognitive impairment) live fulfilling, rich lives and are as happy as non-disabled individuals. He challenged the implicit genetic determinism in embryo selection – there are, he claimed, many other factors that contribute to how well a life goes, including the social setting, and upbringing and as well as the influence of chance events in the child’s future. He identified a substantial problem in predicting the wellbeing of a future child, as well as in comparing different possible futures for a child. The tests that are undertaken, the factors that are identified by them are socially contingent, and (to some degree) arbitrary.
Imagine a future parent who has undertaken whole genome sequencing via a non-invasive prenatal test (not currently possible, but it isn’t far off). The parent may well receive back a report containing multiple genetic markers of disease or disability. (Evidence suggests that apparently healthy individuals carry as many as 100 homozygous mutations for serious disease, though many of these are silent). Faced with this sort of information, a parent is likely to struggle to know what it means for her future child, whether her child would have a good life. Deciding to end a pregnancy because of predicted genetic disability would not guarantee that the next child conceived would have a better life. If the parent had instead been undergoing IVF and had multiple reports back on the different possible embryos that could be implanted, how could a parent possibly choose between the different embryos – each good and bad in different ways?
Given the formidable epistemic challenge in predicting what life would be like based on prenatal testing or genetic tests for an embryo, Shakespeare was critical of the idea that there could be a moral obligation for parents to undertake testing or to select the ‘best’ embryo. Parents might be free to do such testing, but, he implied, that isn’t a question of morality or duty or obligation.
Over question-time, some discussion appeared to identify situations where there could be moral reasons in favour of avoiding future disability, even accepting the epistemic challenges about predicting future wellbeing. For example, one question asked about parents who had undergone IVF and had learned that one embryo had a gene for infantile Tay Sachs – a severe genetic condition that is associated with progressive neurological decline and death in early childhood. Julian gave the example of UK Public Health England advice to travellers to avoid becoming pregnant soon after travelling to regions affected by Zika virus (in order to reduce the risk that a fetus would develop microcephaly). Surely the parents in the first case should not implant the embryo with Tay Sachs. Surely travellers in the second case ought to delay pregnancy to avoid the risk of Zika?
Tom invoked the idea of a virtuous parent, and suggested that a parent concerned about their child would not deliberately choose a very difficult future for their child; he implied that parents faced with the choice, should not deliberately choose a short life filled with pain for their child.
Here I will depart from what Tom actually said in his talk to sketch two possible alternatives to Julian’s principle of procreative beneficence.
Procreative non-maleficence: when considering different possible children, there is only a moral reason to choose one child over another if a child’s future life will be so miserable and short that it would be better that they not exist
This last view is very restrictive. Empirical evidence from people with disabilities, even very severe disabilities, suggest that almost all have lives that they would judge as being worth living. There are a very few situations, where a condition is so severe that it would be a harm to the child to bring them into the world, but those are rare.
Shakespeare’s view might be thought to align with procreative non-maleficence. However, some of his arguments might also be compatible with a more moderate view
Procreative Satisficence: when considering different possible children, based on relevant available information, couples should not aim for the best life, but should select a child who is expected to have a life that is good enough
The idea of “satisficing” is sometimes invoked in economics – it refers to seeking out and choosing options that fulfil a set of minimum criteria. There are many situations in life where we must choose. We choose a partner, a career, a place to live, we decide whether or not to move countries, we worry about which school would be right for our children. Sometimes, we do want to select the very best option. But many times it would so difficult to research all the available options that it would be better to go with one that ticks enough of the boxes. Other times, it seems impossible to choose, because the available choices are all good and bad in different ways and there is no right way to choose between them. In those situations, there may well be options that we can definitely exclude. But there may also be several that would be good enough.
Returning to the idea of a virtuous parent: when parents are making decisions for their children, and about their children, it is very appropriate for parents to care about their child’s future wellbeing. It is morally important for parents to seek lives for their children that will be rich, fulfilling and happy. But, just as Aristotle identified virtue as the mean between two extremes (excess and deficiency), so we might think that the virtuous parent is concerned with their child’s wellbeing to the right degree. That means that they are not maximisers, seeking out the best possible future, but nor are they only concerned if the child’s life will be utter, unremitting misery.
Returning to Shakespeare, it isn’t clear that parents have a moral obligation to seek the best possible life – because it is so hard to predict what would be the best future, and so hard to compare different possible futures. Parents have instead a duty to ensure that their child has a good enough life. Invoking the concept of ‘good enough’ reminds us about the individual values that will inevitably go into such a decision – different families will set the bar at different levels, and that that is quite compatible with Procreative Satisficence. It may in some situations mean selecting against an embryo or fetus with a severe medical condition or disability, while in others it may mean embracing and accepting a future child with disability.
*Full form of PB: “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 as the others, based on relevant, available information” Savulescu, J. (2001). Procreative beneficence: why we should select the best children. Bioethics, 15(5-6), 413–426.
This is a vile idea. According to it, parents fulfill the duties to their children even when they deliberately mutilate them (foot binding, excision) or negligently damage them (lead exposure, fetal alcohol). It’s simply not good enough merely that these children will have lives worth living.
The obvious rejoinder – that we can distinguish between outright harming (impermissible) and mere failures to help (permissible) – just won’t work. Anyone who accepts it must be prepared to give moral carte blanche to every horrible parent who says “hey, get off my back; I know junior is playing with giant firecrackers, but blowing off his hand isn’t gonna cross the ‘not worth living’ threshhold, so I have no duty to intervene.”
I take your point. I think it is a good one. I feel that fundamentally what the present debate reveals is our struggle with the following question: How can we on the one hand pass judgements about wellbeing and how livable lives are in order to make decisions to improve wellbeing and at the same time still look everyone, regardless of talent and disability, regardless of their wellbeing, square in the eye and say “I recognise and respect your equal moral status or moral worth, your equal right to life”. I think both are intuitions of mine but at first hand it seems as if they were the two horns of a dilemma. In this case the idea of satisficence is appealing because it establishes a midpoint between the horns in saying “up to point x we have a duty to improve wellbeing and from there on lives are good enough such that everybody has an equal right to life, moral status or moral worth – from there on we are allowed to but have no duty to decide between them.” I wonder how the dilemma is to be spelled out and whether it could turn out that one can actually hold both intuitions consistently. (Sorry for the messy terminology, I am not sure whether moral worth, status or a right to life is at stake here…)
Being a biologist immersed in the world of assisted reproduction and been part of so many couples’ lives about their decision-making if they should or shouldn’t perform a genetic testing before the implantation, part of the embryo selection process.
Gotta tell you, I sometimes find ethical opinions so retrograde and poorly-informed about what is discussed on the table.
I totally agree that you can’t make the assumption that the embryo will develop any disease (while random) if the parent’s genome is tested. This is completely absurd, even for their parent’s preventive medicine. Reading at your whole genome is for driving you crazy without the correct counceling of a genetist.
The comparison of this premise vs. the genetic testing on embryos is completely different and abysmally not even on the same level (maybe just by the techniques). I really think that ALL people undergoing ART, SHOULD perform genetic testing and embryo selection. For starters, an infertile person/couple already has genetic issues (wether inherited or epigenetic), as the nature already selected them not to leave offspring in the genetic pool.
The purpose of ART is to build families and to benefit all from it. I understand that conservative parties defend the basis of ‘variability’, but let’s all be honest, people with disabilities, with the ones that can be diagnosed with a PGD and tried to avoid, go way deep down on life-threatening conditions. Is hypocritical to think that conditions that threaten life or quality of life, are not worth living. I find this even offensive with people that carry a disability in a world that is still as retrograde to point them out and have not a little respect for their needs.
Thank you for reading. Hope you have a nice day!
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