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Guest Editorial

Creating and Respecting Lives of Value: Reproductive Choices, Disability, and Ethics

Published online by Cambridge University Press:  06 November 2013

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Abstract

Type
Special Section: Rationality, Morality, and Disability
Copyright
Copyright © Cambridge University Press 2013 

Few scholars in bioethics could claim to have matched John Harris’s impact on scholarship, professional practice, and public policy. John’s contribution to the shaping of practical philosophy across the past four decades has been formidable, and no less important has been—and is—his role as a mentor, critic, and friend to so many of us in the field. Whether persuaded by John’s commitment to the demands of practical reason, or whether they question of the basis or implications of his ethical standpoints, many academics in bioethics would wish to celebrate what John has given. As part of a project initiated by Søren Holm, Matti Häyry, and Tuija Takala to do just that, the special section of this issue of the Cambridge Quarterly contains six papers that have been written in John’s honor, as well as John’s most recent contribution to debates on cloning.

The section’s theme is “Rationality, Morality, and Disability,” and it considers some of the central philosophical and political debates about creating and respecting lives of value. The ideas implicit in this theme go to the heart of some of the most heated controversies in applied ethics. Over the years John has had much to say about what makes life valuable, what it means to be a person, what it means to respect persons, what moral limits there are to reproductive choices, what political limitations there should (and should not) be on reproductive freedoms, and what it means to minimize harm and maximize the good in the face of side constraints, granted the moral claims that persons might legitimately make. Famously, John is not afraid to stick to an argument even if its conclusions would strike many as controversial or counterintuitive. In response to John’s scholarship, theorists have engaged him in debates that question his basic precepts, have sought to question his position given various of its logical conclusions, or have worked to advance the scope of ethical inquiry into the areas that he, with others, has put under the spotlight as the field of bioethics has developed. In what follows, there are both direct responses to aspects of John’s work and arguments that examine and expand on matters on which John has written extensively.

First is an article by Heather Draper. Her analysis focuses on the idea of blameworthiness in the context of embryo selection, with particular reference to the morality of selecting an embryo that will develop into a person with a disability. Draper’s analytical framing works from Harris’s arguments about obligations to select the healthiest possible embryo, and the nature of the wrong that you commit if you fail in this regard. Specifically, the position to which she is responding runs that although you are not wronging the chosen child if it happens not to be the healthiest possible one (unless that child’s existence is so awful that it would have been better never to have been), you are committing a more general wrong, and in so doing you attract blame. In supporting this position, Harris, she suggests, overemphasizes the avoidability of impairment, where she would emphasize the avoidability of having a genetically related child. In other words, Draper presents the case that Harris sets too low the threshold for other routes to parenthood, or makes too much of the freedom to have a genetically related child. Moreover, she argues, Harris gives insufficient weight to the strength of the connection between some parents and their “preperson” children, and indeed to the plurality of distinct but equally legitimate choices that parents might make.

Following from this, we find in Heta Gylling’s article a more general challenge to the very idea of having a guiding rationality in our assessment of what constitutes a worthwhile life. Gylling begins with reflections on our relationship with notions of time: our awareness of time, our capacity to observe and measure it, and the ways this allows us to direct our lives. It is our sense of time, she argues, that frames our social, spiritual, and economic existence, and that allows us to judge whether time is being used or wasted. Given our mortality, explorations of what it means to waste time are in essence explorations of what it means to waste life, which opens up a range of questions about what worthwhile existence amounts to. From Gylling’s perspective, which implicitly we may contrast with Harris’s, questions of what amounts to worthwhile life do not permit of obviously right answers. Rather, they can at best be tied to different concepts of human rationality. For Gylling, it is important not to underestimate the implications of the different rationalities, and particularly to recognize how they might be prioritized and safeguarded by the nonneutral political state. Again in a way that is well related to Harris’s work, she argues that those who would aim for perfectionism face the problem of not knowing what a good life—a life of value—really is. She thus sees a conservatism in the agenda of those who would push for policies directed at imposing on us a view of how life is best lived.

These themes feature prominently, albeit in a substantively distinct guise, in the next article, in which Simona Giordano analyses debates on equality and egalitarianism. Giordano looks in particular at questions concerning ethics, policy, and social attitudes to persons with disability. Reflecting on bioethical scholarship in this area, she highlights how contributions have come from various branches of philosophy, including epistemology and ethics. In relation to the latter, Giordano argues that in reality the moral concern is not about practical equality—for achieving qualitative sameness among persons—but about equal respect. To that end, bioethical critiques are concerned with identifying and analyzing harmful and wrongful policies and behaviors. For Giordano, treating different people differently, according to their particular needs and preferences, is not of itself discriminatory or morally offensive. The upshot is that judgments that are couched in terms of egalitarianism but that relate to the badness of being a person with disability are not in truth judgments rooted in equality; they are axiological judgments pertaining to the best sort of life and should be recognized as such.

Rebecca Bennett’s contribution brings such concerns directly back to Harris’s work. Her article focuses on the importance, when considering Harris’s position on parental choices, in distinguishing between the idea that we should do the best for our children and the idea that we choose which children it would be better to exist. Bennett notes how Harris’s moral-philosophical view entails a commitment to equality but argues that his position in relation to procreative choices does not accord with this. On her analysis, Harris’s arguments concerning procreative decisionmaking suggest a lower value in people with disabilities, because his stance shows a preference for a universe with less disability in it to a universe with more disability. Beyond this, however, Bennett argues that Harris anyway cannot justify his position. Among the challenges that she brings are the problems inherent in even establishing what the “best” life is and a failure that she perceives in Harris’s work to account for the distinction between person-affecting and non-person-affecting harms. She also suggests that Harris conflates the idea that it might be more preferable to have a world with less disability in it with the idea that it is morally more preferable to have such a world.

In the following article, Simo Vehmas and Tom Shakespeare also seek to test Harris’s views. Their challenges too are related to Harris’s work on disability, which, they argue, draws from a problematic idea that certain things are self-evidently rational or irrational. In their article, they seek to contrast Harris’s perspective of disability as a “harmed condition” with their own alternative understanding. Harris’s approach, they say, is individualistic: it looks to what possibilities and opportunities people lack. This is conceptually unproblematic but nevertheless concerns Vehmas and Shakespeare for various reasons. First, Harris’s apparently objective account of human well-being, they argue, unduly discounts the subjective position of individuals—for example, some people who are deaf—who would not claim to be disabled. An account of well-being, they argue, must have a subjective nature to it. They go on to discuss different ideas about disability, drawing particularly from the distinction between disability and impairment; the latter is relative to the environment, society, and value systems within which a person exists. For Vehmas and Shakespeare, Harris’s arguments concerning disability are flawed philosophically for being decontextualized and ungrounded and are of little use for application in policy, as his concept of disability fails usefully to define a class of people that might be protected.

The last article before Harris’s is by Steve Edwards. Edwards is also interested in the idea of disability as a harmed condition. He notes how it is analytic, on Harris’s definition, that although a person with disability may lead a good life, without disability his life would be better. After considering differences in ideas concerning sensory disabilities, physical disabilities, and intellectual disabilities, Edwards raises and explores two ideas: first, he aims to question the inevitability of a link between disability and reduced opportunities for worthwhile experiences; second, he aims to question the link between disability and a reduced scope to lead a good life. In studying these questions, he focuses on the importance of asking whether experiences are intrinsically or instrumentally valuable. If the value is instrumental, then a particular disability does not of necessity foreclose access to the goods that might seem to be denied. With regard to the good life, Edwards distinguishes measures that are based on aggregate pleasures, aggregate preferences satisfaction, and aggregate attainment of objective goods. On none of these counts, he argues, does disability of itself necessarily hamper the capacity to lead a good life.

To conclude the special section, John Harris brings a contribution that considers the status and implications of contemporary bioethical and political debates concerning human reproductive cloning. The trigger for his analysis is the recent success in cloning human embryonic stem cells. Harris observes that this refound attention has predictably led to strong, negative reactions, notably in the popular press, notwithstanding clear legal bars to reproductive cloning. In revisiting earlier interest in this issue, Harris reflects on the political and regulatory reactions to the birth of the cloned sheep, Dolly. He argues that the development of laws in response to that event demonstrates both how governments and legislators can react quickly and without regard to rationality and that bad laws, once implemented, are not easily retracted. Rather than a high-impact, irrational reaction to the possibility of human reproductive cloning, a matter that was not anyway immediately a practical problem, a careful, measured debate was needed. However, he suggests that over the last decade or so, things have gone relatively quiet on that front. Harris therefore moves to consider empirical and normative questions that are pertinent to disputes about reproductive cloning. This entails addressing a series of concerns, including arguments about threats to individuality, arguments about human dignity, and unease about safety. On each point, he finds counters to the arguments that would outright proscribe the legitimacy of human cloning. Finally, Harris considers some of the applications of his position on human cloning in the wider context of bioethical arguments about creating and valuing life. He reiterates his commitment to a “harmed condition” view of disability and goes on to consider cloning within the context of reproductive beneficence. When considering our obligations in relation to reproduction, Harris makes clear that there are circumstances in which cloning might be the best option, not as a universal measure but as one legitimate choice among others.