Biospecimen repositories: are blood donors willing to participate?

BACKGROUND: Sponsored by the National Heart, Lung, and Blood Institute, the Retrovirus Epidemiology Donor Studies (REDS-I/-II) have conducted epidemiologic, laboratory, and survey research on volunteer blood donors. Some studies request additional permission to store biospecimens for future studies. The representativeness and applicability of studies performed using repositories may be reduced by low participation rates. STUDY DESIGN AND METHODS: Demographics from subjects consenting to participate in the 2007 REDS-II Leukocyte Antibodies Prevalence Study (LAPS) repository were compared to "study-only" subjects. Data from the 1998 REDS-I survey of donor opinion regarding storage and use of biospecimens were also explored.
RESULTS: Overall, 91% of LAPS subjects agreed to participate in the repository. Odds of repository participation were lower among African American and Hispanic donors, 35- to 44-year-olds, donors who had not completed high school, and donors from one geographic location, regardless of other variables. Survey data from 1998 revealed that 97% of respondents approved of long-term storage of biospecimens, although only 87% indicated that they would personally participate. Many respondents would require notification or their permission be obtained before participation. Minority respondents would require permission or notification more often and were less certain they would personally participate in a repository.
CONCLUSION: Blood donors are quite willing to participate in biospecimen repositories. Regional differences and lower odds of participation in the minority blood donor population may result in a reduced number of biospecimens available for study and a decreased ability to definitely answer specific research questions in these populations.