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Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia

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  • Saukko, Paula M.
  • Richards, Suzanne H.
  • Shepherd, Maggie H.
  • Campbell, John L.

Abstract

Policy makers have suggested that information about genetic risk factors, which are associated with low risk and for which preventive strategies exist, should not be considered "exceptional" and should not warrant special safeguards, such as data protection or specialist pre-test counselling. There is scant research on how such risk factors are perceived, and to explore this we conducted qualitative interviews with 42 participants who had undergone testing in the South West of England for a low risk genetic susceptibility to deep vein thrombosis (DVT). Generally the participants, who were mostly women, thought the test was less serious than a genetic test for a predisposition to breast cancer or a non-genetic, diagnostic test for diabetes. They had used the genetic information to reduce their risk of DVTs by avoiding oral contraceptives and hormone replacement therapy but had not changed their lifestyle. Many considered pre-test genetic counselling unnecessary. However, a subgroup of participants, who were often less educated or at a high risk, were distressed and/or confused about thrombophilia and thought pre-test counselling would have been helpful. The findings indicate an emerging interpretation of genetics not as revealing exceptional or "in depth" knowledge about one's health and identity but as occasionally relevant surface information, which participants use to make specific health decisions but not to transform their everyday lives. However, the views of the subgroup indicate that some participants interpret thrombophilia as serious and/or need special support.

Suggested Citation

  • Saukko, Paula M. & Richards, Suzanne H. & Shepherd, Maggie H. & Campbell, John L., 2006. "Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia," Social Science & Medicine, Elsevier, vol. 63(7), pages 1947-1959, October.
  • Handle: RePEc:eee:socmed:v:63:y:2006:i:7:p:1947-1959
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    References listed on IDEAS

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    1. Marteau, Theresa M. & Weinman, John, 2006. "Self-regulation and the behavioural response to DNA risk information: A theoretical analysis and framework for future research," Social Science & Medicine, Elsevier, vol. 62(6), pages 1360-1368, March.
    2. Senior, Victoria & Marteau, Theresa M. & Peters, Timothy J., 1999. "Will genetic testing for predisposition for disease result in fatalism? A qualitative study of parents responses to neonatal screening for familial hypercholesterolaemia," Social Science & Medicine, Elsevier, vol. 48(12), pages 1857-1860, June.
    3. Petersen, Alan, 2006. "The best experts: The narratives of those who have a genetic condition," Social Science & Medicine, Elsevier, vol. 63(1), pages 32-42, July.
    4. Hallowell, N. & Foster, C. & Eeles, R. & Ardern-Jones, A. & Watson, M., 2004. "Accommodating risk: Responses to BRCA1/2 genetic testing of women who have had cancer," Social Science & Medicine, Elsevier, vol. 59(3), pages 553-565, August.
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    1. Will, Catherine M. & Armstrong, David & Marteau, Theresa M., 2010. "Genetic unexceptionalism: Clinician accounts of genetic testing for familial hypercholesterolaemia," Social Science & Medicine, Elsevier, vol. 71(5), pages 910-917, September.

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