Policing genes: Medicine, Immigration and the Census - Workshop Report
VenueEgenis Office, University of Exeter, Byrne House, St German's Road, Exeter Devon EX4 4PJ
The first workshop in the EGN workstream ‘Genomics and Identity Politics’ took place at Egenis on 13/14 March. ‘Policing genes: Ethnicity in medicine, immigration and the census’ was organised by Egenis Senior Research Fellow Dr Christine Hauskeller, and explored the assumption that ethnicity is entwined with a certain biological design. The meaning and validity of that assumption and the surrounding practices were discussed, focusing on three different social arenas: medicine, immigration, and census and population surveys. The role of genetics in capturing the dimension of ethnicity that matters is distinct in those fields, ranging from highly significant in medicine to minor in the census, where ethnicity is a self-assigned (and an emotive) category. Dr Hauskeller introduced the whole workstream and this particular workshop and its four thematic sessions.
The first session, ‘Survey and Census’, asked whether biological differences are relevant to the categorisation of ethnicity in this field or whether it is only social perception that matters. Dr Richard Tutton (Cesagen, Lancaster) looked at the construction of categories of collective identity pertaining to race/ethnicity, including examining the term ‘race/ethnicity’ itself. One of the most important findings from his analysis is that the categories of classification used by the census have gained a degree of stability and are exported to other fields, in particular medicine. Dr Peter Aspinall (University of Kent) argued that there is no biological basis to the census classifications of ethnicity. The categories are socially constructed and negotiated, with the individual as the final arbiter of his/her own ascription. He agreed that, of necessity, respondents do simplify their own ethnicity to fit given categories, but open responses in the forms lack utility. In her commentary on both papers Dr Yulia Egorova (University of Durham) remarked that these findings were confirmed by her own research centred on Jewish identities. However, she noted that the Bene Israel community operated a complicated system negotiating visual versus genetic identification.
‘Genetic Testing and Immigration’ examined the practice of using genetic tests in order to establish familial relationships in disputed immigration applications. In an extended Q & A session the participants engaged with contributions from two immigration lawyers and learned about their use of genetic technologies in these cases. Unfortunately, despite our invitation, no Home Office representative was present to inform the group on the Government’s historic role and current position on genetic testing. The session noted that tests can support applications where, for example, a parent wants to bring their children to the UK but family membership is disputed. Participants also discussed the introduction of biometric information into border control procedures, and the difficulty of making data secure.
‘Ethnicity in Medicine’ considered the findings of research into the use of race/ethnicity in genetics and biomedical research carried out by a team led by Dr Paul Martin (University of Nottingham). Presenting the research, Dr Martin pointed out that concepts of race and ethnicity are very difficult to standardise. Although it may make practical sense to adopt forms of classification for race/ethnicity used in other areas, for example the census, these essentially social classifications may be invalid for the scientific control of physiological responses. This lack of clarity may be particularly worrying when treatments need to be targeted to particular racial/ethnic groups. In her commentary Dr Pritti Mehta (RNIB and former Access and Equity Officer for the Genetic Interest Group) gave examples of the exclusion of minority ethnic groups from research studies and argued that the purification of test data sets may impact significantly on health inequalities, when majority physiological profiles guide diagnosis and treatment. In his commentary Dr Peter Turnpenny (RD&E Hospital, Exeter) took the practitioner’s point of view. He directed attention to diseases that are specific to or specifically frequent in particular population groups, and questioned how that knowledge might be used in screening. Dr Turnpenny stressed the difficult decisions arising from late-onset diseases becoming profiled in population groups. He also emphasized the need to remain aware of the whole range of reasons for disease, given gene-gene and gene-environment interactions, and saying that the environment is not always outside the body.
In the concluding session Dr Jenny Reardon (University of California) argued that genomics is a site of proliferating identities and is therefore a primary site of struggle over power. She examined the International Haplotype Map Project, and showed the tensions between political sensitivity and biological requirements when she argued that the HapMap researchers' attempt to empower their subjects by allowing them to self-identify in fact cost the project its objectivity and medical utility. In contrast, in his commentary Dr Adam Bostanci (University of Cambridge) suggested that a new understanding of racial groups might arise out of attempts to extend the HapMap data to populations other than those in which the information was obtained. Dr Hauskeller commented that personal identity is dependent on external recognition. Therefore, self-identification as a certain kind of person is always a negotiation between inner self and externally offered legitimate categories. The different normativities in science and social groups crisscross each other in projects such as HapMap.
In the final debate participants considered this interplay of genomics, politics and the self. Dr Reardon argued that researchers need to be more reflective about the political theory in their projects. Dr Tutton agreed that social scientists need to be more reflective about their role and about their politics, but argued that the reasoning behind the pursuit of the science of genomics is under-explored. Professor John Dupré (Egenis) defended genomics as a powerful science. Dr Hauskeller commented that the individual could potentially be subjected to power through the control of genetic data. Genomics has the potential to be used as an instrument which would violate the rights of individuals. Dr Turnpenny agreed that the potential within genomics has attracted a great deal of funding, pointing out that with that money came power. Dr Mehta made the point that genomics is a high- tech solution towards addressing common complex diseases, yet perhaps the knowledge already exists to address those diseases more effectively. Perhaps social scientists need to change emphasis to prioritise the issues around prevention. Dr Martin argued that social scientists need to reflect more on their own role in raising expectations around genomics. Dr Hauskeller pointed out that genomics is an epistemological tool that has multiple applications which benefit different agents within society in different ways. She wondered, further, to what degree science and social science has to legitimise itself. Is it our responsibility as social scientists to do good for the world? Dr Steve Sturdy (Genomics Forum, Edinburgh) questioned whether social assumptions about race are becoming inscribed into biological categories, for example in medicine - are we seeing a convergence of disease identities and ethnic identities? Dr Bostanci also questioned to what extent inferences about race/ethnicity are legitimate. Professor Barry Barnes (Egenis) argued that genomics is not of itself liberal or not liberal. In the past genetics was linked to the outcome of a certain vicious politics. The future of genomics would be a function of future politics.