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The Genethics Club

Michael Parker

The Genethics Club was established in 2001, to provide a social space in which anyone working in clinical genetics in the United Kingdom, including nurses, counsellors, doctors, laboratory staff, and medical researchers, could present and discuss ethical issues arising in their practice www.genethicsclub.org. The Genethics Club is organised by Tara Clancy, Angus Clarke, Anneke Lucassen and Michael Parker. The clinical model for this intervention was the Dysmorphology Club, a pre-existing regular national forum for the presentation and discussion of difficult clinical cases by members of different Regional Genetics Services. Since its inception, the Genethics Club has met 25 times. It has been popular with health professionals and researchers, and attended on average by 35 people, involving several hundred different attendees overall, and including, on a regular basis, members of every clinical genetics service and NHS laboratory in the country. Meetings of the Genethics Club involve presentations by those working in genetics of ‘cases’ that they consider to present ethical issues and to be problematic, either in themselves or in relation to their implications for practice more widely. These case presentations have tended to be rich and have been followed by open discussion. Often, the discussions open up and generate many other ethical issues to those initially presented. Since it began, the Genethics Club has seen approximately 200 case presentations.

I am currently in the process of writing a book on the role of the 'ethicist' based on my experience of the Genethics Club. The methodology adopted and some preliminary analysis has been published as Parker, M. Ethnography/Ethics (2007) Social Science and Medicine