This article provides a critical assessment of some aspects of Ann Kerr and Tom Shakespeare's Genetic Politics: from eugenics to genome. In particular, I evaluate their claims: (a) that bioethics is too ‘top down’, involving normative prescriptions, whereas it should instead be ‘bottom up’ and grounded in social science; and (b) that contemporary bioethics has not dealt particularly well with people's moral concerns about eugenics. I conclude that several of Kerr and Shakespeare's criticisms are well-founded and serve as valuable reminders (...) to the bioethics community. These include the claims: that bioethics ought not to consist entirely of applying moral theory to cases; that bioethics must take account of relevant empirical evidence; and that bioethicists should be on the look out for those subtle social forces which can undermine the voluntariness of people's choices and consents. However, we should reject some of Kerr and Shakespeare's other criticisms and I conclude (amongst other things) that even ‘mainstream’ bioethics is better able to deal with difficult issues like eugenics than Kerr and Shakespeare suggest. (shrink)

This article provides a critical assessment of some aspects of Ann Kerr and Tom Shakespeare's Genetic Politics: from eugenics to genome. In particular, I evaluate their claims: (a) that bioethics is too ‘top down’, involving normative prescriptions, whereas it should instead be ‘bottom up’ and grounded in social science; and (b) that contemporary bioethics has not dealt particularly well with people's moral concerns about eugenics. I conclude that several of Kerr and Shakespeare's criticisms are well-founded and serve as valuable reminders (...) to the bioethics community. These include the claims: that bioethics ought not to consist entirely of applying moral theory to cases; that bioethics must take account of relevant empirical evidence; and that bioethicists should be on the look out for those subtle social forces which can undermine the voluntariness of people's choices and consents. However, we should reject some of Kerr and Shakespeare's other criticisms and I conclude (amongst other things) that even ‘mainstream’ bioethics is better able to deal with difficult issues like eugenics than Kerr and Shakespeare suggest. (shrink)

Selection in reproductive medicine today relies on normative assessments of what ‘good life’ consists of. This paper explores the terms under which such assessments are made by focusing on three particular concepts of ‘quality’: quality of life, biological quality and population quality. It is suggested that the apparently conflicting hypes, hopes and fears that surround reproductive medicine can co-circulate because of the different forms of normative assessment that these concepts allow. To ensure clarity in bioethical deliberations about selection, it is (...) necessary to highlight how these differing forms of assessment are mobilized and invoked in practices of and debates about reproductive medicine. (shrink)

An enduring ethical dispute accompanies prenatal screening and testing (PST) technologies. This ethical debate focuses on notions of reproductive choice. On one side of the dispute are those who have supported PST as a way to empower women’s reproductive choice, while on the other side are those who argue that PST, particularly when made a routine part of prenatal care, limits deliberate choice. Empirical research does not resolve this ethical debate with evidence both of women for whom PST enhances their (...) choices but also persistent evidence of recurrent problems between PST and women’s autonomous decision-making. While there have been attempts to remove challenges to reproductive choice, it has been argued that these challenges cannot be removed entirely. In this paper I provide a historical review of PST technologies’ development and in doing so provide a detailed insight into the root causes of this tension between the opposing sides of this debate. This historical account provides evidence that those who championed the early use of these technologies did so in order to achieve a number of wholly different goals other than women’s choice and empowerment. These different aims focus on scientific discovery and eugenic goals and, I argue, areirreconcilablewith women’s choice and empowerment. It thus may not be surprising that the resulting practice of PST continues to resist compatibility with women’s choice and empowerment. Ultimately, by understanding the historical foundations of PST we can more effectively assess how toreconcilewomen’s reproductive autonomy with routine prenatal screening. (shrink)

Are sociologists always critical about genetics? Are philosophers always more supportive? This is the impression of many sociologists in the United Kingdom who argue that contemporary British philosophers criticise genetic technologies and applications in ways that scientists and medical doctors can deal with. They emphasise matters like informed consent, but pay less or no attention to the wider social consequences of technologies, practices and policies. Philosophers in their turn may see sociologists as irrationally hostile to science and medical practice. Some (...) of them refuse to criticise genetics, arguing that there is nothing to criticise. Others feel that their criticisms are in fact more accurate than the concerns raised by sociologists. And yet others point out that the impression of uncritical support can only be true of a certain specific group. Philosophers have so many internal disagreements among themselves that the generalisation can hardly be justified. In this paper an attempt is made by a sociologist and a philosopher to understand how sociological and philosophical perspectives on bioethics may differ in discussions about genetics. The paper, which proceeds in dialogue form, is based on our email correspondence on the advantages and disadvantages of genetic technologies and their applications, and on the idea of social consequences as understood by scholars from two different disciplines. (shrink)

Epidemiologists and geneticists claim that genetics has an increasing role to play in public health policies and programs in the future. Within this perspective, genetic testing and screening are instrumental in avoiding the birth of children with serious, costly or untreatable disorders. This paper discusses genetic testing and screening within the framework of eugenics in the health care context of India. Observations are based on literature review and empirical research using qualitative methods. I distinguish ‘private’ from ‘public’ eugenics. I refer (...) to the practice of prenatal diagnosis as an aspect of private eugenics, when the initiative to test comes from the pregnant woman herself. Public eugenics involves testing initiated by the state or medical profession through (more or less) obligatory testing programmes. To illustrate these concepts I discuss the management of thalassaemia, which I see as an example of private eugenics that is moving into the sphere of public eugenics. I then discuss the recently launched newborn screening programme as an example of public eugenics. I use Foucault’s concepts of power and governmentality to explore the thin line separating individual choice and overt or covert coercion, and between private and public eugenics. We can expect that the use of genetic testing technology will have serious and far-reaching implications for cultural perceptions regarding health and disease and women’s experience of pregnancy, besides creating new ethical dilemmas and new professional and parental responsibilities. Therefore, culturally sensitive health literacy programmes to empower the public and sensitise professionals need attention. (shrink)

In the last decade, preimplantation genetic testing have become widely used and in 2005 constituted 5 percent of all in vitro fertilization cycles performed in Europe. Their diffusion, however, is not homogenous; while in some countries they are prohibited and in others hardly implemented, Spain performs 33 percent of all the PGD/pgs. While policy guidelines and mainstream bioethics address PGD from a patient choice perspective, disability studies insist on PGD’s potentiality for discrimination. Alternatively, other authors have explored PGD/pgs from the (...) perspective of geneticization but little work has been done on how PGD/pgs are framed by the members of national regulatory bodies. Combining the analysis of juridical documents with semistructured interviews with members of the Spanish National Assisted Reproduction Committee, this study suggests that the remarkable diffusion of PGD/pgs in Spain may be largely due to the interaction between the growing momentum enjoyed by embryonic stem cell research and a vibrant expansion of IVF business along the Mediterranean coast. In this process, genetic issues per se seem to play a minor role, although the prevention of genetic diseases now constitutes the master narrative underpinning the extension of PGD from monogenic, early onset, diseases to polygenic, late-onset, ones. (shrink)