15 Morningside Road, Edinburgh EH10 4DP, Tel: 0131 447 6394 or 0774 298 4459
Edinburgh - 10 June 2003
Organisers: University of Edinburgh
SCHB participant: Dr Calum MacKellar
Innogen was presented as the new Economic & Social Research Council (ESRC) Centre for Social and Economic Research on Innovation in Genomics. And, as such, it is part of the three ESRC Genomics Network Centres across the UK studying the evolution of genomics and life sciences and their far-reaching ethical, social and economic implications. Thus, Innogen's research should provide a base for decision-making in science, industry, policy and public arenas and should improve understanding of each of these groups and their interactions.
Innogen will be funded by the ESRC and based at the University of Edinburgh but will also be run in collaboration with the Open University. The researchers working at the Innogen Centre include social scientists, economists, and lawyers. The Centre will also engage with a wide range of stakeholders, nationally and internationally, including scientists, industry and private interest groups, policy makers, regulators, private citizens and public interest groups.
A Stakeholder Platform will co-ordinate advice from representatives of all of these groups, to ensure that the research programme is well-grounded scientifically, to increase its relevance to users, and to assist in dissemination and application of the research findings.
One of the interesting research topics being proposed is related to donor assisted conception, genetic knowledge and the meanings of kinship. This project aims to explore the meaning of kinship and genetic knowledge to sperm donors in the UK in the context of public and academic debates about the regulation of access to genetic information, genetic information as intellectual property, genetic knowledge as kinship knowledge, and the multiple ownership of genetic information.
This research comes in the context of the UK government’s recent postponement of a decision on the release of genetic information to donor offspring, pending consideration of how policy should be developed and the manner in which to involve stakeholders - past donors, donor offspring, donee parents, infertility treatment centres and the HFEA.
Social science research on sperm donation to date has focused on motivations for donating, psycho-social needs of donors, and their attitudes towards information about themselves being shared with donor offspring. Whilst there has been research into the social aspects of oocyte donation, and although sperm donation has been practised since before the development of reproductive technology and the heightened public interest in genetics, no study has yet been carried out on the donors themselves.
The research questions are:
1. Do sperm donors hold any sense of connection to people conceived as a result of their donation? How do they locate it within their current family life, views about and experience of relatedness, and the ‘cultural repertoire’ of kinship?
2. Do donors perceive a change in their attitudes to their donation over their life course? How are public debates and attitudes about the importance of genetics being accommodated?
3. What are the attitudes of medical practitioners to the significance and use of genetic information, and what connections do they perceive between social and genetic identity?