Participant characteristics that influence consent for genetic research in a population-based survey: The Baltimore epidemiologic catchment area follow-up

Background. The purpose of this study is to investigate the sociodemographic and health characteristics associated with the willingness to donate a DNA sample, and consent to testing and long-term storage of that sample, among participants in a longitudinal community-based survey. Sample: Eighty-three percent of the 1,071 participants interviewed in 2064/5 agreed to donate a biological specimen (blood or buccal). Results: Age was consistently inversely associated with the willingness to allow genetic testing (OR 0.97; p < 0.05), but was unrelated to the willingness to donate or allow storage. There was no association between race and the consent to donate a specimen, but Blacks were less likely to consent to DNA storage for future research as compared with members of other racial groups (OR 0.50; p < 0.01). Four conditions were listed on the consent form as relevant to the genes targeted for assay. Participants with a family history of I or more of these conditions were more likely to donate than those without (OR 1.68; p < 0.01). Participants with a personal history of I of the 4 conditions listed were not more or less likely to donate, allow testing or allow storage than respondents without such a history. Conclusions: Sociodemographic characteristics were unrelated to the willingness to donate a biological sample. Age, but not race, sex or education, was related to consent to genetic testing. Race, but not age, sex or education, was related to consent to storage. A family history of health conditions listed as relevant to the assays being requested was related to the willingness to donate. Factors that affect the willingness to donate a biological sample in an epidemiologic study are not the same as those associated with the willingness to allow genetic testing or storage of that sample for unspecified future research. Copyright (C) 2008 S. Karger AG, Basel.