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The best experts: The narratives of those who have a genetic condition

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  • Petersen, Alan

Abstract

In recent years, there have been growing expectations about the future benefits deriving from the uptake of genetics knowledge in healthcare. At the same time, there have been increasing calls to make greater use of patient expertise in treatment. However, relatively little is known about the experiences, needs and expertise of those who currently have a genetic condition. Drawing on the findings from an Australian study involving 21 semi-structured interviews with members of support groups which represent those with various genetic conditions (cystic fibrosis, haemochromatosis, haemophilia, and thalassaemia) this article discusses how individuals learn about, live with and manage their condition, and assesses the extent to which their experiences differ from those with other chronic illness conditions. It argues that while the experiences of individuals who have a genetic condition would appear to be similar in many respects to those with other chronic illnesses, they tend to encounter particular challenges in managing their condition due to its inheritable nature.

Suggested Citation

  • 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.
    • Handle: RePEc:eee:socmed:v:63:y:2006:i:1:p:32-42
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    References listed on IDEAS

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    1. Crawford, Robert, 1994. "The boundaries of the self and the unhealthy other: Reflections on health, culture and AIDS," Social Science & Medicine, Elsevier, vol. 38(10), pages 1347-1365, May.
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    1. Alexandra C.H. Nowakowski, 2019. "The Salt without the Girl: Negotiating Embodied Identity as an Agender Person with Cystic Fibrosis," Social Sciences, MDPI, vol. 8(3), pages 1-18, March.
    2. Weiner, Kate, 2011. "Exploring genetic responsibility for the self, family and kin in the case of hereditary raised cholesterol," Social Science & Medicine, Elsevier, vol. 72(11), pages 1760-1767, June.
    3. Wendy Geuverink & Carla El & Martina Cornel & Bert Jan Lietaert Peerbolte & Janneke Gitsels & Linda Martin, 2023. "Between desire and fear: a qualitative interview study exploring the perspectives of carriers of a genetic condition on human genome editing," Palgrave Communications, Palgrave Macmillan, vol. 10(1), pages 1-9, December.
    4. Whitmarsh, Ian & Davis, Arlene M. & Skinner, Debra & Bailey, Donald Jr., 2007. "A place for genetic uncertainty: Parents valuing an unknown in the meaning of disease," Social Science & Medicine, Elsevier, vol. 65(6), pages 1082-1093, September.
    5. 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.

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