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Choosing ChildrenReview - Choosing Children
Genes, Disability, and Design
by Jonathan Glover
Oxford University Press, 2006
Review by Robert Scott Stewart, Ph.D.
Feb 6th 2007 (Volume 11, Issue 6)

It has now been over twenty years since Jonathan Glover published What Sort of People Should There Be, which explored the then brand new field of genetic intervention. At that time, "no philosophers had written on genetic issues and it was widely believed that choosing genes for children was either impossible or at least not even on the horizon. So I had to make it all up myself" (114). In contrast, genetic intervention is now the subject of intense debate from a wide variety of fields, much of it empirically based. 

One change to note in particular is the current inclusion in the debate of the narrative voices of people with certain conditions historically classified as disabilities. Ironically, however, these new voices have raised concerns about what used to be the least controversial area of genetic interventions in human reproduction; namely, interventions that would rid (potential) children of certain adverse genetic conditions. While there is still general (though not universal) agreement that we ought to eradicate certain genetic disorders, such as Tay-Sachs disease, sickle-cell anemia, and hemophilia, there is a great deal of controversy regarding what to do regarding genetically based disabilities. Consider, as Glover does, the recent case of Sharon Duchesneau and Candy McCullough, a lesbian couple, both of whom were deaf, who chose a sperm donor with hereditary deafness in order to produce a deaf child. According to them, their action was justified because deafness is not a disability or a disease, it's merely a difference that is, moreover, worth keeping.

At the heart of this matter is how we are to define a disability. According to the medical or functional view, a disability is the absence or malfunctioning of a system that results in a person having impaired abilities to cope with life (6). Thus, a malfunctioning visual system results in the disability of blindness. 'Disability' activists, contrastingly, have argued for a social constructionist view that regards a disability as the product of the way(s) in which a society deals with people who have certain conditions. Hence, being in a wheelchair is not a disability in a society where everything is wheelchair accessible. Glover maintains that both of these views are inadequate on their own, and argues for an "interactionist" account where "[d]isability requires failure or limitation of function. But a limitation of function creates disability only if (on its own or via social discrimination) it impairs capacities for human flourishing" (9).

Using this characterization, Glover presents a nuanced argument that begins by asserting that deafness is a genuine disability since it impairs human flourishing -- imagine never having heard your favorite piece of music or the soft whisper of your lover's voice in your ear. The argument progresses, however, by insisting on at least two further points: (i)  "[e]ach of us has some disadvantage or other compared to some different child our parents might have had instead," (24) and (ii) that much of the suffering that comes from having certain disabilities comes not from the condition itself but from people's (and society's) reaction and treatment of people with those conditions. Hence, we need to work on ways to mitigate the harm perpetrated on the disabled caused by these inappropriate views. Nevertheless, he argues, there is still something wrong about purposefully creating a child with a disability.  

The second chapter extends this conversation by considering what we owe our future children. This question is complicated enough as it is typically posed, but an extra layer of difficulty arises when we ask the question about children who do not yet exist. Most basically, can we owe non-existent people anything? Glover thinks we can. As Derek Parfit argued in Reasons and Persons (1984), just as we can make the world worse off without harming particular people, so too we can make illegitimate genetic interventions even if they harm no particular person. The real difficulty here, Glover suggests, is determining the baseline for what will constitute harm. On the one hand, there is the "zero-line" view that claims it is wrong to create a child only when its life would be so terrible that the child would be better off dead. Alternatively, we could adopt a "perfectionist" view, which would stipulate that "we should aim to have children who will have the best chance at a good human life" (53). Although Glover has some admiration for this perfectionist ideal, he argues that we are not obligate' to pursue it, and would in fact run afoul of people's liberty if we tried to impose it. However, the zero-line view seems to set the bar too low, and so Glover argues for a modified version of it. In particular, Glover suggests that we have a responsibility to only have children "with a decent chance of a happy life" (58-59) while respecting their identity and autonomy. This is very general but Glover maintains that this is all the nature of the subject allows, and hence we must examine cases individually. However, he says, many of the headline making cases -- such as lesbian couples or older women having children, or even purposefully having a deaf child, do not seem to come close to crossing the line into a failure to provide children their due.

In the third and final chapter of Choosing Children, Glover looks at issues of genetic enhancement. He notes first that the traditional claim that "it is justifiable to make genetic changes only if they are medical [i.e., disorders or disabilities] is unsupportable" (75). If we accept Glover's principle that genetic interventions ought to be guided by improving chances for human flourishing, then eliminating any genetic disposition that poses an obstacle to human flourishing is at least allowable, whether that obstacle is a disorder (like Tay-Sachs), a disability (like blindness), or a character trait (like laziness).

In general, Glover argues for a modified version of what Nozick called a "genetic supermarket," where we allow individuals to pick and choose genetic interventions for their children. Such a marketplace, he thinks, will avoid problems associated with centrally controlled, state eugenics programs. I'm not as convinced as Glover since we have seen that despite its appearance of offering genuinely free choice, the global marketplace tends toward a debilitating sameness of options. However that issue is resolved, we can agree that if we allow individual choice here, that choice will need to be constrained in some ways because left on their own some people will make illegitimate genetic choices for their future children. To deal with this, Glover suggests a form of 'transpersonal' harm principle. The difficulty here, however, is determining what constitutes a harm in this context. In order to answer this, Glover suggests that we must grapple with the related issues of what features of human nature are worthy of retaining, and also what constitutes a good human life. On this score, Glover suggests that there have been two traditions, broadly construed, regarding the good life: one seeks to pursue human flourishing while the other seeks to promote human happiness. Glover opts for a convergence of the two: "The Aristotelian version [of human flourishing] has to take account, not just of 'functioning' seen objectively from outside, but also of how a life seems to the person living it. It also has to become open-ended, allowing for changes possibly going beyond current views of human flourishing. The utilitarian version [concentrating on happiness] has to bring in some evaluation of experiences or desires. And this evaluation is likely to be linked to some idea of a rich human life" (92-93).

Working out the details here is important but we need to remind ourselves that the project of defining a good life is genuinely open ended: what we must be careful to avoid is introducing global changes that will make it difficult to change our course. Glover urges, then, that we be optimistic in principle but cautious in our practice when introducing genetic modifications, a point he summarizes by quoting from Nozick: "It is helpful to imagine cavemen sitting together to think up what, for all time, will be the best possible society and then setting out to institute it. Do none of the reasons that make you smile at this apply to us" (Cited, 103-104)?

Although this is a little book, it is filled with big, bright ideas. Nevertheless, it does have some of the limitations of a short book since it fails to provide details at some crucial points. Having said that, however, the book is an excellent introduction to the topic and I can envision using it in courses where I cover topics in the ethics of genetic intervention. In general, Glover deserves credit for his vision twenty years ago on the importance of examining issues in genetic intervention. Indeed, Glover was part of a group that changed the face of contemporary ethical research -- from the rather dry (and some would say rather pointless) meta-ethical analysis of the meaning of moral terms that was the rage for a good part of the twentieth century -- to a focus on more practical moral issues. And he did this both in his research -- including Causing Death and Saving Lives (1977), The Glover Report (1989, written for the European Commission on New Reproductive Technologies), and Humanity, (1999) -- and in his teaching where he was part of a radical group of lecturers at Oxford in the 1960's who educated some of the most influential thinkers in practical ethics of our times.

 

© 2007 Robert Scott Stewart

Robert Scott Stewart, Department of Philosophy, Cape Breton University, Sydney, NS, Canada


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