Presenting Author: M. Aileen Shinaman, Rochester, NY, and the Huntington Study Group

Objective: To determine the willingness of study participants to consent for future, unspecified research involving DNA samples despite potential risks of discrimination or breach of confidentiality. (Science 1996; 274:621-624; BMJ 1998; 317:1632-1635).

Methods: In two controlled studies conducted by the Huntington Study Group (HSG), individuals at risk for Huntington’s Disease (HD) and those clinically affected by HD were asked to allow the HSG to keep their blood sample indefinitely for future unspecified genetic research. The studies included the RID-HD (Riluzole Dosing in Huntington’s Disease, in press) investigation involving 63 participants affected by HD and PHAROS (Prospective Huntington At Risk Observational Study, currently ongoing), involving 393 adult participants who were at immediate risk for HD and who have chosen not to undergo presymptomatic testing for the HD gene.

Results: Of the 63 RID-HD participants, all except one (98.41%) consented for a sample to be used for future unspecified research. In the PHAROS study, 355 of 393 (90.4%) participants at risk for HD granted permission for future research; 9.6% requested destruction of their sample after conclusion of the observational study.

Conclusions: These data suggest that individuals at risk for or affected by HD are largely willing to consent to future broadly specified genetic research of their stored DNA samples. These results are in keeping with a study of 1,947 adults not known to be at risk for or affected by a genetic disorder (National Health and Nutrition Examination Survey (NHANES), 1999), where 84% consented to the use of their donated samples in future unspecified DNA research.

Acknowledgements: RID-HD was supported primarily by a grant from the Food and Drug Administration Office of Orphan Products Development (FD-R-001671-01) Both RID-HD and PHAROS were supported in part by grants from the Huntington Disease Society of America (HDSA).

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