Transformations in Genetic Subjecthood
Abstract
The project will explore people's views on the ownership, control and access to genetic data in relation to new developments in genetic diagnosis and databanks. This will be based on a series of focus groups with scientists, clinicians, representatives from the pharmaceutical and insurance industries and policy-making bodies, and members of the public. The study will examine their accounts of the relationships which shape both the structure and content of genetic regulation, research and services. This will involve a critical examination of people's notions of citizenship; consumption and expertise; noting how particular tensions, for example between rights and responsibilities, are negotiated by focus groups, in relation to certain topics, such as genetic donation. This will contribute to more reflexive policy-making about genetics by giving an insight into the sorts of positions which are mobilized and mediated in this process, and add to the theoretical understanding of genetic subjecthood in contemporary society.
Summary
Background
As the Human Genome Project and the associated efforts to characterise genes involved in a range of diseases and disorders expands, so too do concerns about gene patenting, and discrimination on the basis of genetic data by insurance companies and employers. The extent to which people can be said to own their genetic information, and what this means in terms of other people's access to and use of that information are at the heart of these matters. 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.
This project explores contemporary 'genetic subjecthood' in terms of how people relate to themselves and to others in the context of genetics research. We will address people's views on the ownership, control and use of genetic information in relation to new developments in diagnostics and databases. Based on a series of focus groups with scientists, clinicians, representatives from the pharmaceutical and insurance industries and policymaking bodies, and different publics, we will analyse their accounts of the relationships that shape both the structure and content of genetic regulation, research and services and critically engage with their notions of citizenship, consumption and expertise.
Research Design
We have chosen focus groups as our primary research method. Focus groups have been found to be highly effective with lay people because they generate sophisticated discussion in which personal testimony and direct experience can be usefully combined with debate and reflection on the wider social and scientific issues. We believe that their use should now be extended to professionals and policymakers, providing them with a similar environment for sophisticated and challenging discussion of relevant issues.
We plan to convene groups involving people from what we see as the most relevant parties concerned with the aspects of 'genetic subjecthood' that we wish to explore, such as health charities, molecular and clinical geneticists, representatives from the pharmaceutical and insurance industries, or support groups. We also want to include groups who are less directly affected by these issues but whose perspective is important given that developments in genetics has implications for the community as a whole.
In the focus groups we will explore questions such as what relationships exist between genetic researchers and subjects? To what extent do people now approach genetic governance, genetic tests and potential treatments as 'health consumers'? In what ways if any are people's sense of the role of genetic consumers being challenged by notions of citizenship? What are people's perceptions of responsibility to society with regard to tissue donation?
We anticipate that there will be a series of 24 focus groups, with 4-6
members each, conducted over two distinct phases.
Phase 1: Groups 1-12 will comprise, for example, molecular geneticists,
patient group members, insurance industry representatives, community group
members, or government policymakers.
Phase 2: Groups 13-24 will involve a combination of new participants representing
each of the first set of groups, their selection depending on analysis of
the data. These groups could include people with an interest in a particular
disease or regulatory issue.
Although these groups should not be viewed as a representative sample,
they will nonetheless give us access to a broad range of perspectives, open
to detailed analysis. The research will be conducted according to the ethical
guidelines laid down by the British Sociological Association that emphasise
the importance of trust, respect, informed consent and feedback to participants
in research findings.
Policy and Academic Implications
This project will provide a rich dataset on a wide range of groups' attitudes to genetic subjecthood at a time of rapid development in genetics research, services and governance. This should be of particular interest to policymakers grappling with the detail of genetic regulation, patenting or the establishment of Biobank UK. It could also afford a theoretical insight into the social and cultural context of personhood in the age of genetics.
This research will be a valuable addition to methodological developments in sociology, extending the use of focus groups to generate sophisticated discussion amongst professional as well as public groups. This approach may also have a valuable contribution to make to the actual process of policymaking on genetics in the future, and we will reflect on this potential during the project.
We aim to publish several papers in international mainstream sociology journals, specialist journals on health, genetics, medicine and policymaking. The final report will be circulated widely among numerous user groups and a supplemental report will address the use of focus groups in their own right.
Contacts
Outputs
Kerr, A. (2003) 'Rights and Responsibilities in the New Genetics Era' Critical Social Policy, 23 (2) 208-226
Kerr, A. (2003) 'Regulating Genetics: Reifying Choice and Progress', New Genetics and Society, 22 (2) 141-56
News
July 2003
The TIGS latest update can be found here - word doc
October 2002
Our first six months on the project have been concerned with reviewing the existing research literature on the implications of developments in genetics for ideas of personhood and citizenship. We have also been collecting various news and commentary items on UK Biobank, other genetic database projects, and the ongoing debate about gene patenting. The purpose of this part of the project was to have a sense of which particular themes and issues could be further explored in our own research and to inform ourselves of the latest developments.
In September we presented a paper based on the work that we've done during the first stage of the project at the British Sociological Association Medical Sociology Annual Conference that was held at the University of York (27-29 September 2002). The paper was entitled 'Exploring formations of genetic subjecthood'. We have submitted a revised version of this paper for publication in a respected peer-reviewed journal.
We have also been preparing for the second stage of the project that involves conducting twelve discussion groups with professionals, policy-makers and members of the public. To that end we conducted two pilot discussion groups in July and August that have enabled us to develop further the specific issues that we want to focus on.
Towards the end of September we started some of the work of the second stage by holding the first of our twelve discussion groups with four genetic counsellors. We met for ninety minutes and had what was a very interesting conversation, which provided a valuable insight into the clinical side of genetics.
Thanks to everyone who has taken part in all of the discussion groups to date.