Definitions Of Genetic Knowledge & Pre-Implantation Genetic Diagnosis: An Ethnography
L218 25 2036
Lancaster University & Guy's King's & St Thomas'
Dr S Franklin, Professor A Rutherford & Professor P Baude
January 2001 - December 2002
Website
Abstract
The proposed multi-sited ethnographic study of pre-implantation diagnosis offers to provide qualitative insights into public, professional, and patients' understandings of genetic choice in the context of procreation. With the co-operation of two PGD clinics, in London and in Leeds, participant observation within two PGD units and in-depth personal interviews with up to 25 patients will be conducted by the PI. This data, gathered from a specific context of encounter with genetic medicine, will be analysed from a multi-disciplinary perspective as a means of providing indicative insights into the meaning of genetic risk, identity, connection, and selection. A project researcher will be employed to document and analyse public debate of PGD in Britain from 1995 onwards, as a means both of more precisely contextualising the ethnographic findings of the project, and facilitating research outcomes - in particular to policy-makers. Through close co-operation with clinicians, this research will contribute to existing anthropological work on the social meanings of 'geneticisation', and will make available the results of qualitative social science research to a wide range of potential users. An end-of-project workshop will be conducted in April 2002 to assess research findings and target potential audiences and user groups.
Summary
Background
With the aid of two participating teams at two PGD clinics, up to 25 couples will be recruited from among the current pool of patients at various stages of the process of undergoing PGD. The interview pool will be recruited from three groups of PGD referrals: those with autosomal recessive conditions, x-linked conditions, and translocations (Robertsonian and reciprocal). The interviews will yield a substantial body of data on users' perceptions of the technique, including changes in what they have expected of it, areas of difficulty, management of information both related to the technique and in relation to wider communities of family and friends, perceptions of media and other representation of the technique, understandings of genetic disease, and issues of risk, choices and decision making and how they have been affected by them.
Research Design
The study will focus in depth on the experiences of parents, siblings and children from 36 families living in the north of England. All the children in the sample will be dependent on one or more medical technologies on a daily basis; they will also be drawn from different family backgrounds (including single parent families and ethnic minorities) so that any variations in their experiences can be explored. A variety of qualitative methods will be used in order to obtain the perspectives of the disabled children and young people, their siblings, and their parents. These include face-to-face semi-structured interviews, self-completed diaries, and more visually-based methods for involving children who are able to take part in facilitated interviews. In addition, a small number of professionals from statutory and voluntary agencies will be interviewed in order to acquire further information about examples of good practice highlighted by the families who participated in the study.
Policy and Academic Implications
By focussing on the meanings of genetic substance, the framing of genetic
choice in the context of reproduction, and the way ideas of genetic knowledge
and genetic 'identity' are articulated, this study seeks to explore the
responses of PGD users in order to generate an original empirical portrait
of their understandings of the technologies, the decisions, and the challenges
this technique presents. While PGD is a very specific technique directly
affecting only a tiny number of patients, the issues it raises are much
more widespread, indeed arguably affecting almost everyone at this point
in time.
For example, the relationships of users to genetic information will be of
interest, as will be the question of attitudes toward embryo selection.
The role of the media and the internet will be explored, as will be perceptions
of the reactions of friends, family, colleagues, or 'society at large'.
All of these questions will enable an ethnographic exploration of aspects
of geneticisation (including understandings of genetic identity, information,
choice, knowledge and risk) within a specific, purposive, sample. At a point
in time when public trust in science in general, and genetic medicine in
particular, is an urgent concern of Parliament, government, industry and
medicine, multi-disciplinary research informed the incentive to improve
qualitative social studies through close cooperation with clinicians is
a clear priority.
Contacts
Outputs
For a full list of project outputs please visit http://www.regard.ac.uk
Papers
Franklin, Sarah (2003) 'Rethinking nature-culture: anthropology and the new genetics' Anthropological Theory, Vol 3(1):65-85.
Franklin, Sarah (in press a) 'Ethical Biocapital: new strategies of cell culture' in S. Franklin and M. Lock, eds., Remaking Life and Death: toward an anthropology of the biosciences, Santa Fe, NM: School of American Research Press.
Franklin, Sarah (in press b) 'Stem Cells R Us: emergent life forms and the global biological', in A. Ong and S. Collier, eds., Global Anthropology: technology, governance, ethics, New York: Blackwell.
Franklin, Sarah and Lock, Margaret (in press c) 'Animation and Cessation: the remaking of life and death', in S. Franklin and M. Lock, eds., Remaking Life and Death: toward an anthropology of the biosciences, Santa Fe, NM: School of American Research Press.
Franklin, Sarah and Nahman, Michal (2003) Ethnographic Encounters with Reprogenetics: a Workshop Report, Department of Sociology, Lancaster Univeristy
Franklin, Sarah (2002a) 'Mapping the New Genetics' Finnish Information Studies 20: 27-45.
Conference Papers
S. Franklin (2002) 'Respatialising genealogy, recalibrating life', Invited Lecture, Royal Society of Geographers Annual conference, Belfast, January
S. Franklin and C. Roberts (2002) 'Designer Babies: Consumer reproduction or parental obligation?' Things that Don't Quite Fit, Lancaster University, 1 March. Also presented at the Department of Sociology, University of Edinburgh, 6 March.
S. Franklin and C. Roberts (2002) 'Designer Babies: Reproductive choice, genetic selection and parental obligation', South East London Midwifery Research Symposium, King's College London, 25 March. Also presented at Department of Health and Policy Studies, University of Central England, Birmingham, 1 May.
C. Roberts (2002) 'Designing Babies: Demanding Citizens', Reimagining Communities, Lancaster University, 23 - 25 May.
S. Franklin and C. Roberts (2002) 'Babies by Design: Ethnographic Perspectives on Pre-implantation Genetic Diagnosis', Centre for Family Research Genetics Group Seminar Series, Cambridge University, 10 June
C. Roberts (2002) 'Reproducing Identity in The Context of Pre-Implantation Genetic Diagnosis', European Association for the Study of Science and Technology Conference, 31 July - 4 August
C. Roberts (2002) 'Embryo Tracings: Towards an Ethnography of the New Genetics', Keynote address, Wellcome Trust Postgraduate Forum on the New Genetics, Cambridge, 9-11 September
S. Franklin and C. Roberts (2002) 'New Reproductive Choices', Institute for Women's Studies seminar series, Lancaster University, 16 October
C. Roberts (2002) 'Definitions of Genetic Knowledge and Pre-Implantation Genetic Diagnosis: An ethnographic study', Reprogenetics Workshop, Lancaster University, 25 October.
S. Franklin and C. Roberts (2002) 'Definitions of Genetic Knowledge and Pre-Implantation Genetic Diagnosis: An Ethnography', GlaxoSmithKline Innovative Health Technologies Programme Workshop, Stevenage, 30 October
S. Franklin and C. Roberts (2002) 'Making Designer Babies', American Anthropological Association Annual Conference, New Orleans, 20-24 November
S. Franklin and C. Roberts (2002) 'Patient experiences of pre-implantation genetic diagnosis', CESAGen Meeting No. 1, Lancaster University, 16-17 December
Franklin, Sarah and Roberts, Celia (2002) 'Listening to uncertainties: preliminary findings from an ethnography of PGD', powerpoint 'exit' presentation to the Guy's and St Thomas's PGD team, 17 June (30pp, available online at: http://www.comp.lancs.ac.uk/sociology/IHT/Mainpage.htm).
Franklin, S. (Oral) The Loss of Biological Limits: Social Aspects of the New Genetics. HUGO Meetings. 2001, Edinburgh.
News
No news