The Human Genome Project will produce information permitting increasing opportunities to prevent genetically transmitted harms, most of which will be compatible with a life worth living, through avoiding conception or terminating a pregnancy. Failure to prevent these harms when it is possible for parents to do so without substantial burdens or costs to themselves or others are what J call “wrongful handicaps”. Derek Parfit has developed a systematic difficulty for any such cases being wrongs — when the harm could be (...) prevented only by preventing the existence of the individual who would have a worthwhile life even with the handicap, then bringing him into existence with the handicap does not make him worse off and so does not wrong him. I argue that a non “person‐affecting” principle requiring the avoidance of suffering and limited opportunity correctly accounts for cases of wrongful handicaps without requiring that the individuals with the handicap have been made worse off and therefore wronged. It is an advantage, not a difficulty, of this account that it does not imply that the person with the handicap has been wronged or is a victim with a special moral complaint. (shrink)

The Human Genome Project will produce information permitting increasing opportunities to prevent genetically transmitted harms, most of which will be compatible with a life worth living, through avoiding conception or terminating a pregnancy. Failure to prevent these harms when it is possible for parents to do so without substantial burdens or costs to themselves or others are what J call “wrongful handicaps”. Derek Parfit has developed a systematic difficulty for any such cases being wrongs — when the harm could be (...) prevented only by preventing the existence of the individual who would have a worthwhile life even with the handicap, then bringing him into existence with the handicap does not make him worse off and so does not wrong him. I argue that a non “person‐affecting” principle requiring the avoidance of suffering and limited opportunity correctly accounts for cases of wrongful handicaps without requiring that the individuals with the handicap have been made worse off and therefore wronged. It is an advantage, not a difficulty, of this account that it does not imply that the person with the handicap has been wronged or is a victim with a special moral complaint. (shrink)

Challenging, with several powerful arguments, some of our deepest beliefs about rationality, morality, and personal identity, Parfit claims that we have a false view about our own nature. It is often rational to act against our own best interersts, he argues, and most of us have moral views that are self-defeating. We often act wrongly, although we know there will be no one with serious grounds for complaint, and when we consider future generations it is very hard to avoid conclusions (...) that most of us will find very disturbing. (shrink)

The Rejected Body argues that feminist theorizing has been skewed toward non-disabled experience, and that the knowledge of people with disabilities must be integrated into feminist ethics, discussions of bodily life, and criticism of the cognitive and social authority of medicine. Among the topics it addresses are who should be identified as disabled; whether disability is biomedical, social or both; what causes disability and what could 'cure' it; and whether scientific efforts to eliminate disabling physical conditions are morally justified. Wendell (...) provides a remarkable look at how cultural attitudes towards the body contribute to the stigma of disability and to widespread unwillingness to accept and provide for the body's inevitable weakness. (shrink)

Since the 1980s, a number of medical researchers have suggested that in the future it might be possible for men to become pregnant. Given the role played by the right to reproductive liberty in other debates about reproductive technologies, it will be extremely difficult to deny that this right extends to include male pregnancy. However, this constitutes a reductio ad absurdum of the idea of reproductive liberty. One therefore would be well advised to look again at the extent of this (...) purported right in other contexts in which it is deployed. (shrink)

In this paper, I respond to criticisms by John Harris, contained in a commentary on my article “Harris, harmed states, and sexed bodies”, which appeared in the Journal of Medical Ethics, volume 37, number 5. I argue that Harris's response to my criticisms exposes the strong eugenic tendencies in his own thought, when he suggests that the reproductive obligations of parents should be determined with reference to a claim about what would enhance ‘society’ or ‘the species’.

We have a reason to use information which is available about such genes in our reproductive decision-making; (3) couples should selec.

My critics in this symposium illustrate one principle and three fallacies of disability studies. The principle, which we all share, is that all persons are equal and none are less equal than others. No disability, however slight, nor however severe, implies lesser moral, political or ethical status, worth or value. This is a version of the principle of equality. The three fallacies exhibited by some or all of my critics are the following: Choosing to repair damage or dysfunction or to (...) enhance function, implies either that the previous state is intolerable or that the person in that state is of lesser value or indicates that the individual in that state has a life that is not worthwhile or not thoroughly worth living. None of these implications hold. Exercising choice in reproduction with the aim of producing children who will be either less damaged or diseased, or more healthy, or who will have enhanced capacities, violates the principle or equality. It does not. Disability or impairment must be defined relative either to normalcy, “normal species functioning”, or “species typical functioning”. It is not necessarily so defined. (shrink)

Is there such a thing as a social conception of disability? Recently two writers in this journal have suggested not only that there is a coherent social conception of disability but that all non-social conceptions, or “medical models” of disability are fatally flawed. One serious and worrying dimension of their claims is that once the social dimensions of disability have been resolved no seriously “disabling” features remain. This paper examines and rejects conceptions of disability based on social factors but notes (...) that physical and mental conditions which disadvantage the individual have social dimensions. (shrink)

With a few notable exceptions disability studies has not taken account of intersexuality, and it is principally through the lenses of feminist and queer-theory oriented ethical discussions but not through ‘straight’ bioethics that modes valuing intersex difference have been proposed. Meanwhile, the medical presupposition that intersex characteristics are inherently disabling to social viability remains the taken-for-granted truth from which clinical practice proceeds. In this paper I argue against bioethical perspectives that justify extensive and invasive pre- and post-natal medical interference to (...) eradicate intersex. I argue instead that to constitute the necessary conditions for the recognition of the intersexed child as a person, a life valid in its own right, clinicians must refrain from aggressive interference. Clinical specialists presuppose that intersexed children will be socially disabled and unrecognizable as persons; frustrated by the general failure of traditional interventions to assign a sex, clinicians are now pursuing prenatal technologies, including selective termination, to erase intersex. (shrink)

"Why are there 'transsexuals' but not 'transracials'?" "Why is there an accepted way to change sex, but not to change race?" I have repeatedly heard these questions from theorists puzzled by the phenomenon of transsexuality. Feminist thinkers, in particular, often seem taken aback that in the case of category switching the possibilities appear to be so different. Behind the question is sometimes an implicit concern: Does not the (hypothetical or real) example of individual “transracialism” seem politically troubling? And, if it (...) is, does not the case of transsexuality merit equivalent critique? Or, conversely, if one accepts transsexuals as people with legitimate demands (e.g., on medical resources or single-sex spaces), then would one not also be committed to accepting the putative transracial in analogous ways? Understanding the ontological constraints and possibilities with regard to transforming one’s identity is, I suggest, a project that should accompany ethical evaluation of those transformations. Under what circumstances is it (un)ethical to leave behind a gender or racial group with which one has once been affiliated? This question is, again, especially pressing for radical thinkers who endorse the claims that race and gender taxonomies are internally hierarchical and constituted through relations of oppression, domination, and normalization. Changing one’s identity under these circumstances will surely always be linked, however tenuously, to consideration of the larger political and cultural milieu in which such changes are advantageous or disadvantageous, complicit with oppressive norms and/or resistant to them. To illuminate these larger questions, in this paper, I first provide three examples of the analogy thesis in feminist thinking about race and sex change, each of which draws ethical conclusions about individual motivation, political strategy, or public policy, premised on the assumption that race and sex change are equivalent phenomena. None of these accounts consider the genealogy of each category as significant to contemporary possibilities. I next offer a descriptive analysis that highlights different norms at play in contemporary North American understandings: Sex–gender, I argue, is essentialized as a property of the individual’s body, while race is essentialized with reference to both the body and ancestry. This analysis, I conclude, shows politically significant disanalogies between the categories, and reveals the importance of genealogical accounts of race and sex in thinking ethically about changing ourselves. (shrink)

Following extensive examination of published and unpublished materials, we provide a history of the use of dexamethasone in pregnant women at risk of carrying a female fetus affected by congenital adrenal hyperplasia (CAH). This intervention has been aimed at preventing development of ambiguous genitalia, the urogenital sinus, tomboyism, and lesbianism. We map out ethical problems in this history, including: misleading promotion to physicians and CAH-affected families; de facto experimentation without the necessary protections of approved research; troubling parallels to the history (...) of prenatal use of diethylstilbestrol (DES); and the use of medicine and public monies to attempt prevention of benign behavioral sex variations. Critical attention is directed at recent investigations by the U.S. Food and Drug Administration (FDA) and Office of Human Research Protections (OHRP); we argue that the weak and unsupported conclusions of these investigations indicate major gaps in the systems meant to protect subjects of high-risk medical research. (shrink)

____The Rejected Body__ argues that feminist theorizing has been skewed toward non-disabled experience, and that the knowledge of people with disabilities must be integrated into feminist ethics, discussions of bodily life, and criticism of the cognitive and social authority of medicine. Among the topics it addresses are who should be identified as disabled; whether disability is biomedical, social or both; what causes disability and what could 'cure' it; and whether scientific efforts to eliminate disabling physical conditions are morally justified. Wendell (...) provides a remarkable look at how cultural attitudes towards the body contribute to the stigma of disability and to widespread unwillingness to accept and provide for the body's inevitable weakness. (shrink)

By exploring and giving equal weight to transgendered subjectivities, however, Gayle Salamon upends these certainties.

In Enhancing Evolution, leading bioethicist John Harris dismantles objections to genetic engineering, stem-cell research, designer babies, and cloning and makes an ethical case for biotechnology that is both forthright and rigorous. Human enhancement, Harris argues, is a good thing--good morally, good for individuals, good as social policy, and good for a genetic heritage that needs serious improvement. Enhancing Evolution defends biotechnological interventions that could allow us to live longer, healthier, and even happier lives by, for example, providing us with immunity (...) from cancer and HIV/AIDS. Further, Harris champions the possibility of influencing the very course of evolution to give us increased mental and physical powers--from reasoning, concentration, and memory to strength, stamina, and reaction speed. Indeed, he says, it's not only morally defensible to enhance ourselves; in some cases, it's morally obligatory. In a new preface, Harris offers a glimpse at the new science and technology to come, equipping readers with the knowledge to assess the ethics and policy dimensions of future forms of human enhancement. (shrink)

The book constitutes a reconsideration of her earlier view on gender performativity from Gender Trouble. In this work, the critique of gender norms is clearly situated within the framework of human persistence and survival.

In general, to enhance something is to raise that thing in degree, intensity, magnitude, or in some sense improve upon it.2 In this context, we are concerned with enhancements, ie amplifications or extensions, of human capabilities, ...

This paper uses the fictional case of the ‘Babel fish’ to explore and illustrate the issues involved in the controversy about the use of cochlear implants in prelinguistically deaf children. Analysis of this controversy suggests that the development of genetic tests for deafness poses a serious threat to the continued flourishing of Deaf culture. I argue that the relationships between Deaf and hearing cultures that are revealed and constructed in debates about genetic testing are themselves deserving of ethical evaluation. Making (...) good policy about genetic testing for deafness will require addressing questions in political philosophy and anthropology about the value of culture and also thinking hard about what sorts of experiences and achievements make a human life worthwhile. (shrink)

In this paper, I explore the “expressivist critique” of the use of prenatal testing to select against the birth of persons with impairments. I begin by setting out the expressivist critique and then highlighting, through an investigation of an influential objection to this critique, the ways in which both critics and proponents of the use of technologies of genetic selection negotiate a difficult set of dilemmas surrounding the relationship between genes and identity. I suggest that we may be able to (...) advance the debate about these technologies by becoming more aware of the ways in which this debate is itself in part a political contestation over this relationship. Ultimately, I will argue, the real force of the expressivist objection lies in its capacity to draw our attention to political questions about the role of the state and about relationships between different social groups rather than between parents and prospective children. That is to say, crucial issues, when evaluating the force of this criticism, turn out to be: the nature of the institutions which determine how decisions about prenatal selection are made; and how we think of each other, that is, what we take to be the defining characteristics of human beings. Paradoxically, arguments about the ethics of the “sorting society”, both supportive and critical, are an important arena in which these institutions and these ideas about identity are contested and shaped. An increased awareness of the reflexive nature of the process of debating these issues may assist us in better negotiating them. (shrink)