Original Paper

Participant Characteristics That Influence Consent for Genetic Research in a Population-Based Survey: The Baltimore Epidemiologic Catchment Area Follow-Up
Briana Mezuk, William W. Eaton, Peter Zandi

Department of Mental Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, Md., USA

Address of Corresponding Author

Community Genet 2008;11:171-178 (DOI: 10.1159/000113880)

  Key Words

• Genetic research
• Blood donation
• DNA storage

  Abstract

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 2004/5 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 1 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 1 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 © 2008 S. Karger AG, Basel

  Author Contacts

Briana Mezuk
624 North Broadway
Suite 886
Baltimore, MD 21205 (USA)
Tel. +1 443 287 8630, Fax +1 410 955 9088, E-Mail bmezuk@jhsph.edu

  Article Information

Published online: March 26, 2008
Number of Print Pages : 8
Number of Figures : 0, Number of Tables : 4, Number of References : 44