Genetic Testing Accounts of Autonomy, Responsibility and Blame

Advances in molecular genetics have led to the increasing availability of genetic testing for a variety of inherited disorders. While this new knowledge presents many obvious health benefits to prospective individuals and their families it also raises complex ethical and moral dilemmas for families as well as genetic professionals. This book explores the ways in which genetic testing generates not only probabilities of potential futures, but also enjoys new forms of social, individual and professional responsibility. Concerns about confidentiality and informed consent involving children, the assessment of competence and maturity, the ability to engage in shared decision-making through acts of disclosure and choice, are just some of the issues that are examined in detail.

1. Introduction 2. Genetic Testing: Technology in Context 3. Neo-liberalism and the New Genetics 4. Rhetorical Discourse Analysis 5. Personal Genomics and the Media 6. Family Accounts of Genetic Responsibility 7. Accounts of Genetic Testing in the Clinic 8. Professional Accounts of Ethical Challenges in Prenatal Clinic 9. Conclusion

Michael Arribas-Ayllon isLecturer in Biological and Cognitive Psychology atCardiff University. His research interests include histories and futures of biological knowledge, the social shaping of genetic testing, the politics of personalised medicine and the discourse ethics of genetic counselling and risk communication. Srikant Sarangi is Professor of Language and Communication and Director of the Health Communication Research Centre at Cardiff University. His research interests are in discourse analysis and applied linguistics, language and identity in public life, and institutional/professional discourse studies. He is author/editor of 12books, guest-editor of five journal special issues and has published over200 journal articles and book chapters. Angus Clarke is Professor in Clinical Genetics in Cardiff University. Hehas interests in Rett syndrome and ectodermal dysplasia, as well as genetic screening, the genetic counselling process and the social and ethical issues raised by advances in human genetics. He also teaches and works as a clinician. He represents the Chief Medical Officer for Wales on the Human Genetics Commission. He has co-authored and edited six books, including Genetics, Society and Clinical Practice (jointly with Professor Peter Harper).