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Who owns genetic information?

Posted on 21 May 2002

One hundred scientists, policymakers, and members of the public are to be questioned by academics at the University of York about their perceptions of the ownership and control of genetic research.

Work on the genetic aspects of many medical disorders and diseases has raised concerns about gene patenting and about the possibility of discrimination by insurance companies and employers on the grounds of a person's genetic history. The ownership of genetic information has become a crucial issue for debate.

Dr Anne Kerr and Dr Richard Tutton of the Department of Sociology at York, together with Dr Sarah Cunningham-Burley of the Centre for Research on Families and Relationships at the University of Edinburgh, will look at how people consider they or others 'own' and use their genetic information, and how their views are influenced by feelings about social responsibility, or citizenship.

Dr Kerr said: "These issues have been thrown into sharp relief by the 'Biobank UK' initiative that will collect tissue samples, medical records and lifestyle data from 500,000 volunteers."

(The Wellcome Trust, The Medical Research Council, and the Department of Health have provided an initial £45million for a study of genes, environment and health.)

She added: "We will hold a series of focus groups with scientists, clinicians, representatives from the pharmaceutical and insurance industries, policy-making bodies, and different members of the public.

"Focus groups have been found to be highly effective when they involve lay people and professionals because personal experience can be combined with debate on the wider social and scientific issues.

"We plan to convene groups including health charities, molecular and clinical geneticists, representatives from the pharmaceutical and insurance industries, and support and community groups.

"We will explore the relationships between genetic researchers and the people they are researching. We want to know if people think about this as purely a health matter, or a social matter. What are people's perceptions of responsibility to society with regard to tissue donation, for example?

"The work should be of particular interest to policy-makers grappling with the detail of genetic regulation, patenting or the establishment of Biobank UK.

Notes to editors:

  • The project, 'Transformations in Genetic Subjecthood', is funded by the ESRC Innovative Health Technologies Programme Phase 2
  • It has been granted £133,500 over two years
  • The research will be conducted according to the ethical guidelines laid down by the British Sociological Association, emphasising the importance of trust, respect, informed consent and feedback to participants in research findings.
  • York's Department of Sociology puts a strong emphasis on the public understanding of science
  • It was awarded a grade 5 in the 2001 HEFC Research Assessment Exercise

Contact details

David Garner
Senior Press Officer

Tel: +44 (0)1904 322153