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Introducing Social and Ethical Perspectives on Gene—Environment Research

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  • Gail E. Henderson

    (University of North Carolina at Chapel Hill, ghenders@med.unc.edu)

Abstract

Sociologists are increasingly involved with the design and execution of studies that examine the interplay between genes and environment, requiring expertise in measurement of both genetic and nongenetic factors. In addition, there are important lessons from a literature, heretofore directed primarily at medical geneticists and clinical researchers, that examines the ethical, legal, and social implications (ELSI) of the genomic revolution. This article introduces ELSI perspectives on the challenges that confront investigators who undertake gene—environment research and offers nine recommendations based on this literature. These challenges include assessing how genetic information is understood; minimizing potential risks of harm from participation in gene—environment research; and considering ethical aspects of variable selection, study design, dissemination of study findings, and whether to disclose genetic results to individual participants.

Suggested Citation

  • Gail E. Henderson, 2008. "Introducing Social and Ethical Perspectives on Gene—Environment Research," Sociological Methods & Research, , vol. 37(2), pages 251-276, November.
  • Handle: RePEc:sae:somere:v:37:y:2008:i:2:p:251-276
    DOI: 10.1177/0049124108323536
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    References listed on IDEAS

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    1. Henderson, Gail E. & Easter, Michele M. & Zimmer, Catherine & King, Nancy M.P. & Davis, Arlene M. & Rothschild, Barbra Bluestone & Churchill, Larry R. & Wilfond, Benjamin S. & Nelson, Daniel K., 2006. "Therapeutic misconception in early phase gene transfer trials," Social Science & Medicine, Elsevier, vol. 62(1), pages 239-253, January.
    2. 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.
    3. Guang Guo & Yuying Tong, 2006. "Age at first sexual intercourse, genes, and social context: Evidence from twins and the dopamine D4 receptor gene," Demography, Springer;Population Association of America (PAA), vol. 43(4), pages 747-769, November.
    4. Kaufman, Jay S., 2008. "Epidemiologic analysis of racial/ethnic disparities: Some fundamental issues and a cautionary example," Social Science & Medicine, Elsevier, vol. 66(8), pages 1659-1669, April.
    5. Bates, Benjamin R. & Lynch, John A. & Bevan, Jennifer L. & Condit, Celeste M., 2005. "Warranted concerns, warranted outlooks: a focus group study of public understandings of genetic research," Social Science & Medicine, Elsevier, vol. 60(2), pages 331-344, January.
    6. Gollust, S.E. & Apse, K. & Fuller, B.P. & Miller, P.S. & Biesecker, B.B., 2005. "Community involvement in developing policies for genetic testing: Assessing the interests and experiences of individuals affected by genetic conditions," American Journal of Public Health, American Public Health Association, vol. 95(1), pages 35-41.
    7. Parrott, Roxanne L. & Silk, Kami J. & Condit, Celeste, 2003. "Diversity in lay perceptions of the sources of human traits: genes, environments, and personal behaviors," Social Science & Medicine, Elsevier, vol. 56(5), pages 1099-1109, March.
    8. Francis S. Collins & Eric D. Green & Alan E. Guttmacher & Mark S. Guyer, 2003. "A vision for the future of genomics research," Nature, Nature, vol. 422(6934), pages 835-847, April.
    9. Armstrong, David & Michie, Susan & Marteau, Theresa, 1998. "Revealed identity: a study of the process of genetic counselling," Social Science & Medicine, Elsevier, vol. 47(11), pages 1653-1658, December.
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