Community Genetics and Genetic Alliances
Eugenics, Carrier Testing, and Networks of Risk
By Aviad E. Raz
Published February 21st 2012 by Routledge – 208 pages
Series: Genetics and Society
Carrier testing of adults provides information about the risk of passing a genetic mutation to your children, leading to reproductive (and some say, eugenic) decisions. Excessive carrier screening may have adverse effects, but it can also prevent suffering and open up new reproductive options. Raz's study focuses on the interplay of community genetics (the medical organisation of carrier screening) and genetic alliances (networks of individuals at risk), exploring how 'genetic communities' are emerging both within existing ethnic groups and around patients' organizations.
While the interplay between carrier testing, reproduction and eugenics has sparked many discussions, this study provides a novel and much-needed perspective on its actual implementation and interpretation by community members. Conflating a cross-cultural spectrum of genetic communities, the benefits and perils of supporting (or restricting) carrier screening are located within broader social issues such as religion, ethnicity, multi-culturalism, abortion, stigmatization, suffering and care-giving. While carrier screening emerges as ultimately a morally justified pronatalist endeavour for the reduction of suffering, thus being different in principle from the 'old' eugenics, it can also carry unintended adverse consequences if left unattended to consumers, communities, or health professionals.
'Using opportunities to reduce suffering is a laudable intention, whatever it is called. The road to hell, however, is paved with good intentions too. Thanks heaven critics like Aviad Raz keep us alert by pointing out unwanted side effects. A warned human counts for two.' – Leo P ten Kate, Professor Emeritus of Clinical Genetics, VU University Medical Center, Amsterdam, The Netherlands
'Everyone confronting the social, cultural and ethical aspects of this field should reflect carefully on what this book has to say. It is an original, empirically informed and invaluable addition to the literature' – Ruth Chadwick, Director of the ESRC Centre for Economic and Social Aspects of Genomics, Cardiff University, UK
Introduction: Carrier Testing, Eugenics, and Networks of Risk 1. What is Community Genetics? Definitions and Debates 2. Carrier Matching and Collective Socialisation: Dor Yesharim and the Reinforcement of Stigma 3. Reproductive Carrier Testing between Orthodoxy and Change 4. The Medicalisation of Cousin Marriage: Carrier Testing in a Muslim Community 5. Genetic Alliances: The Dilemma of Care and Prevention 6. Scientific, Communal and Lay Interpretations and Communicative Gaps Regarding Carrier Testing Conclusion: In Search of Moral Models
Aviad E. Raz is Professor of Organizational and Medical Sociology, Ben-Gurion University of the Negev, Beer-Sheva, Israel, where he is also directing the Behavioural Sciences Program. He has published on the subject of organisational culture, as well as on the social and bioethical aspects of health organisations, especially in the context of community genetics.