Sharing findings with the Huntington disease (HD) community and other genetic disease communities is challenging because of the sensitivity involved in effectively communicating findings to participants. We describe our experiences of presenting multi-disciplinary research findings to the HD community, and discuss the need to: (1) balance potential benefits and harms for participants, researchers, and others; (2) demonstrate respect for participants' needs, expectations, and priorities; and (3) ensure transparency and respect for autonomy.
BombardY.PalinJ.FriedmanJ. M.VeenstraG.CreightonS.PaulsenJ. S. (2010). Factors associated with experiences of genetic discrimination among individuals at risk for Huntington disease. American Journal of Medical Genetics, Part B: Neuropsychiatric Genetics, 156B(1), 19–27.
2.
BombardY.PenzinerE.DecolongonJ.KlimekM. L.CreightonS.SuchowerskyO. (2007). Managing genetic discrimination: Strategies used by individuals found to have the Huntington disease mutation. Clinical Genetics, 71(3), 220–231.
3.
BombardY.PenzinerE.SuchowerskyO.GuttmanM.PaulsenJ. S.BottorffJ. L. (2008). Engagement with genetic discrimination: Concerns and experiences in the context of Huntington disease. European Journal of Human Genetics, 16(3), 279–289.
4.
BombardY.VeenstraG.FriedmanJ. M.CreightonS.CurrieL.PaulsenJ. S. (2009). Perceptions of genetic discrimination among people at risk for Huntington's disease: A cross-sectional survey. British Medical Journal, 338, b2175.
5.
BrettellC. B. (1993). When they read what we write: The politics of ethnography. Westport, CT: Bergin & Garvey.
6.
CooperM. (2008). Sharing data and results with study participants: Report on a survey of cultural anthropologists. Journal of Empirical Research on Human Research Ethics, 3(4), 19–34.
7.
CoxS. M. (2002). Personal perspectives on genetic testing for Huntington disease. Cambridge, Ontario: Huntington Society of Canada.
8.
CoxS. M. & McKellinW. (1999). “There's this thing in our family”: Predictive testing and the construction of risk for Huntington disease. Sociology of Health and Illness, 21(5), 622–646.
9.
DresslerL. G. & JuengstE. T. (2006). Thresholds and boundaries in the disclosure of individual genetic research results. The American Journal of Bioethics, 6(6), 18–20; author reply W10–12.
10.
FernandezC. V.KodishE., & WeijerC. (2003). Informing study participants of research results: An ethical imperative. Institutional Review Boards, 25(3), 12–19.
11.
HarperP. S.GeversS.de WertG.CreightonS.BombardY., & HaydenM. R. (2004). Genetic testing and Huntington's disease: Issues of employment. Lancet Neurology, 3(4), 249–252.
12.
McDonaldM.TownsendA.CoxS. M.PatersonN. D., & LafreniereD. (2008). Trust in health research relationships: Accounts of human subjects. Journal of Empirical Research on Human Research Ethics, 3(4), 35–47.
13.
MillerF. A.ChristensenR.GiacominiM., & RobertJ. S. (2008). Duty to disclose what? Querying the putative obligation to return research results to participants. Journal of Medical Ethics, 34(3), 210–213.
14.
PartridgeA. H. & WinerE. P. (2002). Informing clinical trial participants about study results. Journal of the American Medical Association, 288(3), 363–365.
15.
PielkeR. (2007). The honest broker: Making sense of science in policy and politics (pp. 1–49). New York: Cambridge University Press.
16.
PullmanD. & HodgkinsonK. (2006). Genetic knowledge and moral responsibility: Ambiguity at the interface of genetic research and clinical practice. Clinical Genetics, 69(3), 199–203.
17.
RavitskyV. & WilfondB. S. (2006). Disclosing individual genetic results to research participants. The American Journal of Bioethics, 6(6), 8–17.
18.
RobertsJ. S.ShalowitzD. I.ChristensenK. D.EverettJ. N.KimS. Y.RaskinL. (2010). Returning individual research results: Development of a cancer genetics education and risk communication protocol. Journal of Empirical Research on Human Research Ethics, 5(3), 17–30.
19.
RothsteinM. A. (2006). Tiered disclosure options promote the autonomy and well-being of research subjects. The American Journal of Bioethics, 6(6), 20–21.
20.
SemakaA.CreightonS.WarbyS., & HaydenM. (2006). Predictive testing for Huntington disease: Interpretation and significance of intermediate alleles. Clinical Genetics, 70(4), 283–294.
21.
ShalowitzD. I. & MillerF. G. (2008). Communicating the results of clinical research to participants: Attitudes, practices, and future directions. PLoS Medicine, 5(5), e91.
22.
SobelS. K. & CowanD. B. (2000). Impact of genetic testing for Huntington disease on the family system. American Journal of Medical Genetics, 90(1), 49–59.
23.
TurnerS. (2001). What is the problem of experts?Social Studies of Science, 31(1), 23–49.
