IDEAS home Printed from https://ideas.repec.org/a/sae/somere/v37y2008i2p251-276.html
   My bibliography  Save this article

Introducing Social and Ethical Perspectives on Gene—Environment Research

Author

Listed:
  • 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
    as

    Download full text from publisher

    File URL: https://journals.sagepub.com/doi/10.1177/0049124108323536
    Download Restriction: no

    File URL: https://libkey.io/10.1177/0049124108323536?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    References listed on IDEAS

    as
    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. 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.
    5. 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.
    6. 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.
    7. 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.
    8. 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.
    9. 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.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Navon, Daniel & Shwed, Uri, 2012. "The chromosome 22q11.2 deletion: From the unification of biomedical fields to a new kind of genetic condition," Social Science & Medicine, Elsevier, vol. 75(9), pages 1633-1641.
    2. Arribas-Ayllon, Michael & Sarangi, Srikant & Clarke, Angus, 2008. "Managing self-responsibility through other-oriented blame: Family accounts of genetic testing," Social Science & Medicine, Elsevier, vol. 66(7), pages 1521-1532, April.
    3. Do, D. Phuong & Frank, Reanne & Finch, Brian Karl, 2012. "Does SES explain more of the black/white health gap than we thought? Revisiting our approach toward understanding racial disparities in health," Social Science & Medicine, Elsevier, vol. 74(9), pages 1385-1393.
    4. Kevin P. Weinfurt & Damon M. Seils & Janice P. Tzeng & Kate L. Compton & Daniel P. Sulmasy & Alan B. Astrow & Nicholas A. Solarino & Kevin A. Schulman & Neal J. Meropol, 2008. "Expectations of Benefit in Early-Phase Clinical Trials: Implications for Assessing the Adequacy of Informed Consent," Medical Decision Making, , vol. 28(4), pages 575-581, July.
    5. Marsh, Vicki & Kamuya, Dorcas & Rowa, Yvonne & Gikonyo, Caroline & Molyneux, Sassy, 2008. "Beginning community engagement at a busy biomedical research programme: Experiences from the KEMRI CGMRC-Wellcome Trust Research Programme, Kilifi, Kenya," Social Science & Medicine, Elsevier, vol. 67(5), pages 721-733, September.
    6. Wolters, Anna & de Wert, Guido & van Schayck, Onno & Horstman, Klasien, 2014. "Constructing a trial as a personal lifestyle change project: Participants' experiences in a clinical study for nicotine vaccination," Social Science & Medicine, Elsevier, vol. 104(C), pages 116-123.
    7. Pinar, Candas & Almeling, Rene & Gadarian, Shana Kushner, 2018. "Does genetic risk for common adult diseases influence reproductive plans? Evidence from a national survey experiment in the United States," Social Science & Medicine, Elsevier, vol. 218(C), pages 62-68.
    8. Sarradon-Eck, Aline & Sakoyan, Juliette & Desclaux, Alice & Mancini, Julien & Genre, Dominique & Julian-Reynier, Claire, 2012. ""They should take time": Disclosure of clinical trial results as part of a social relationship," Social Science & Medicine, Elsevier, vol. 75(5), pages 873-882.
    9. Theresa M. Marteau & Scott Roberts & Susan LaRusse & Robert C. Green, 2005. "Predictive Genetic Testing for Alzheimer's Disease: Impact upon Risk Perception," Risk Analysis, John Wiley & Sons, vol. 25(2), pages 397-404, April.
    10. Heather Skirton & Lorraine Q Frazier & Amy O Calvin & Marlene Z Cohen, 2006. "A legacy for the children – attitudes of older adults in the United Kingdom to genetic testing," Journal of Clinical Nursing, John Wiley & Sons, vol. 15(5), pages 565-573, May.
    11. Liang Yulan & Kelemen Arpad, 2016. "Bayesian state space models for dynamic genetic network construction across multiple tissues," Statistical Applications in Genetics and Molecular Biology, De Gruyter, vol. 15(4), pages 273-290, August.
    12. Arribas-Ayllon, Michael, 2016. "After geneticization," Social Science & Medicine, Elsevier, vol. 159(C), pages 132-139.
    13. Boardman, Felicity & Clark, Corinna, 2022. "‘We're kind of like genetic nomads': Parents' experiences of biographical disruption and uncertainty following in/conclusive results from newborn cystic fibrosis screening," Social Science & Medicine, Elsevier, vol. 301(C).
    14. Jonas Lander & Tobias Hainz & Irene Hirschberg & Daniel Strech, 2014. "Current Practice of Public Involvement Activities in Biomedical Research and Innovation: A Systematic Qualitative Review," PLOS ONE, Public Library of Science, vol. 9(12), pages 1-17, December.
    15. Shepherd, Richard & Barnett, Julie & Cooper, Helen & Coyle, Adrian & Moran-Ellis, Jo & Senior, Victoria & Walton, Chris, 2007. "Towards an understanding of British public attitudes concerning human cloning," Social Science & Medicine, Elsevier, vol. 65(2), pages 377-392, July.
    16. Goven, Joanna, 2008. "Assessing genetic testing: Who are the "lay experts"?," Health Policy, Elsevier, vol. 85(1), pages 1-18, January.
    17. Miller, Fiona Alice & Ahern, Catherine & Ogilvie, Jacqueline & Giacomini, Mita & Schwartz, Lisa, 2005. "Ruling in and ruling out: Implications of molecular genetic diagnoses for disease classification," Social Science & Medicine, Elsevier, vol. 61(12), pages 2536-2545, December.
    18. O'Doherty, Kieran C. & Burgess, Michael M. & Edwards, Kelly & Gallagher, Richard P. & Hawkins, Alice K. & Kaye, Jane & McCaffrey, Veronica & Winickoff, David E., 2011. "From consent to institutions: Designing adaptive governance for genomic biobanks," Social Science & Medicine, Elsevier, vol. 73(3), pages 367-374, August.
    19. Shostak, Sara & Zarhin, Dana & Ottman, Ruth, 2011. "What's at stake? Genetic information from the perspective of people with epilepsy and their family members," Social Science & Medicine, Elsevier, vol. 73(5), pages 645-654, September.
    20. Shim, Jae-Mahn & Kim, Jibum, 2020. "Contextualizing geneticization and medical pluralism: How variable institutionalization of traditional, complementary, and alternative medicine (TCAM) conditions effects of genetic beliefs on utilizat," Social Science & Medicine, Elsevier, vol. 267(C).

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:sae:somere:v:37:y:2008:i:2:p:251-276. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: SAGE Publications (email available below). General contact details of provider: .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.