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Translating Genetic Disease

Translating Genetic Disease . Anne Kerr University of York. Transformations in Genetic Subjecthood . Anne Kerr, Sarah Cunningham-Burley & Richard Tutton ESRC Innovative Health Technologies Programme March 2002-4

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Translating Genetic Disease

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  1. Translating Genetic Disease Anne Kerr University of York

  2. Transformations in Genetic Subjecthood • Anne Kerr, Sarah Cunningham-Burley & Richard Tutton • ESRC Innovative Health Technologies Programme March 2002-4 • Subject positions in accounts of ownership, control and access to genetic information • Citizenship, consumption, expertise

  3. Focus Groups • FG #1 : Genetic Counsellors (23.09.02) • FG #2 : Cancer Support Group (13.11.02) • FG #3 : Human Genetics Commission (19.11.02) • FG #4 : Campaign/Consumer Groups (19.11.02) • FG #5: School Pupils (26.11.02) • FG #6: Friargate Friends (16.1.03) • FG #7: Genetics Interest Group (20.1.03) • FG #8: Clinical Geneticists (27.1.03) • FG #9: Northern Refugee Centre (29.1.03) • FG #10: University Researchers (10.2.03)

  4. FG #11: Actuaries (19.2.03) • FG #12: Pharmaceutical Industry (23.7.03) • FG #13: Alzheimer's Society (30.7.03) • FG #14: Biobank Managers at CIGMR (11.11.03) • FG #15: Primary Care Trust (1.12.03) • FG #16: Local Research Ethics Committee (5.1.04) • FG #17: Lay Magistrates (6.1.04) • FG #18: Friends of the Earth (15.1.04) • FG #19: Strategic Health Authority (21.1.04)

  5. Focus Groups • Active interviews • Identity constructed through discourse • Semi-structured and iterative – 2 phases • Open-ended questions and vignettes • Focus upon gene patenting, biobanking and direct-to-consumer genetic tests

  6. Genes being constructed • Simple genes • Milestone • Progress • Real • Shared • Crude

  7. Genes being constructed • Complex genes • Expertise • Commercial exploitation • Future • Holism

  8. Milestone (FG 7 GIG) [Q – what does human genetics mean to you?] JF: Well that means a great deal to the Haemochromatosis Society because they found the gene in 1996 on … and that means that family members can be screened and identified and just that they prevent any complications, they will never over load iron. So they should have a completely normal life. So we're very much in favour of it. And our members are very … some people don't want to have tests, but that's true, you know, across the board. But on the whole, most family members are really keen to have the genetic test and know how they stand with it.

  9. Real (FG 1 Counsellors) SL: I don't understand how it ever became possible to patent a gene in the first place. It's just absolutely ridiculous. It's not an invention. OK, a test might be, but a genetic sequence; it's a discovery; you can't patent a discovery.

  10. Progress (FG 19 SHA) DJ: It is understanding … you don't ask people whether you spend money on sending the Beagle to Mars. RM: Yes …. DJ: It's a good in itself. Somebody says look let’s do this. But … we might be astute enough to say is it … a wise use of money? … that's a major decision but it doesn't affect me as an individual … And I think genetic research is another example. It's like physics research there may be some good, and therefore we'll want to increase our knowledge; let's do it.

  11. Shared (FG 14 Biobank) BO: … The whole business of of … putting a gene from a fish into a tomato … this is seen by many people as being absolutely flying in the face of … God's creation. There are fish genes and there are tomato genes, [but] all DNA code is DNA code,… we all possess DNA code that has evolved and changed over eons, through evolution … DNA is DNA; code is code … it's only when you start to really think of things in that way that … some of the issues become less worrying.

  12. Crude genes(i) (FG 14 Biobank) BO: ... And you know people are very very confused about the relationship between genetically modified foods and human, you know, genetic testing … to them … genetics is genetics; DNA is DNA. … I'm all for public engagement and public involvement, but really there's a big big hill to climb in terms of educating people, so they can make that sort of input.

  13. Crude genes (ii) (FG 6 – Friends) DH: Or a paedophilia gene for example think of the dynamic behind that. EB: Which gene? DH: A paedophilia gene, can we pick them out of the population, lock 'em up before they can do any harm, it's a sobering thought actually. RT: Would the rest of you be concerned about … research that was done using the Biobank on … criminal or antisocial behaviour…? GS: I certainly think the ethical considerations are different [from medical research] and I can see David's point about how if you have the information it can always be misused … if it's there then there could be political pressure … DH: Even the terrorist, there's a lot of use now of forensic psychologists who are looking for a personality type after that big American building that was knocked down … can you spot the gene? I mean I know this is starting to get a bit ridiculous in a way but I mean when you get this kind of focus I think that's a problem really.

  14. Simple Gene Themes • Patient empowerment • Discovery motif • Knowledge as progress • Master molecule • Public imagination susceptible to hype • Questioning ‘science as politics’

  15. Expertise (FG 8 Geneticists) 01: No but the thing with gene conditions [is] if somebody tests negative … they [can] say that they're not going to develop that condition but with some of the other conditions like the cancer you can't be absolutely sure that they won't develop it for some other reason even if they don't have a specific cancer gene … but it's difficult to get people to understand that this is only one possible cause of cancer.

  16. Commercial exploitation (FG 4 Campaigners) HW: … one of our overall concerns is that research is more and more being; medical research is more and more being driven by producing commercial products … which may or may not be of significant help in treating different diseases. And with genetics in particular, you see an erosion of the difference between academia and commercial application … that means that a lot of population based health measures for example will get neglected because there's no prospect of making money out of them. You can get conflicts of interest because perhaps employers … particularly in hazardous industries, or the tobacco industry … could be looking for genetic susceptibility to their own products or pollution. And whilst patient groups can play a useful role particularly on issues about access, … you don't see those bigger political issues really being addressed about the future direction of health care.

  17. Future (FG 11 Actuaries) AM: … the quantitative mathematical modelling for the financial part of genetics which is what we do, has on the whole lead to rather benign conclusions. … where the impact of a a mutation is serious, which is in the single gene disorders, then it is serious. But these are especially rare [so] the impact on industry is not likely to be large. So there are ways of dealing with that … when you come to multifactorial disorders and commondiseases like heart disease and and cancers, then individually the impact of a particular mutation is likely to be small. At the moment, there's no epidemiology; almost no epidemiology of these … But it's questionable whether there are enough people on the planet to get large enough samples to do reliable statistics of risk analysis … because they're all very heterogeneous … so that also leads to a rather benign conclusion that the impact on insurance is not going to be all that large.

  18. Holism (FG 18 Friends of the Earth) M2: And they can't know what will happen if they find say a cancer gene, and then get rid of it. What else is that gene doing? … it might be doing something positive to us, and they don't know that until it's taken away.

  19. Complex Gene Themes • Patient with high expectations • Biovalue-v-public health • Benign capitalism • Unforeseen consequences • Professional reflexivity

  20. Stories about … • Ourselves … positioning as • Expert • Advocate • Legitimate member of group • Ethical beings • Reflexive • Positioning others as • Deficient in knowledge • Biased • Narrow minded • Fearful

  21. Stories about … • Governance • Politics • Health care • Profit • Democracy • Regulation

  22. Genes in Discursive Contexts • Simple genes and complex genes are relative constructs • Cannot trace simple genes onto simple governance • Ditto for complex genes • Simple and complex genes associated with contested futures • But don’t need to focus on genes to explore these issues …

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