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American Journal of Epidemiology Advance Access published online on August 23, 2006
American Journal of Epidemiology, doi:10.1093/aje/kwj286
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American Journal of Epidemiology Copyright © 2006 by the Johns Hopkins Bloomberg School of Public Health All rights reserved; printed in U.S.A.
Received November 18, 2005
Accepted April 10, 2006

PRACTICE OF EPIDEMIOLOGY

Obtaining Informed Consent for Genetic Studies

David Green 1 *, Mary Cushman 2, Norma Dermond 3, Eric A. Johnson 3, Cecilia Castro 4, Donna Arnett 5, Joel Hill 6, and Teri A. Manolio 7

1 Department of Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL
2 Department of Medicine, University of Vermont, Colchester, VT; Department of Pathology, University of Vermont, Colchester, VT
3 Department of Biostatistics, University of Washington, Seattle, WA
4 Department of Medicine, Columbia University College of Physicians and Surgeons, New York, NY
5 Department of Epidemiology, University of Alabama, Birmingham, AL
6 Department of Epidemiology, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD
7 Division of Epidemiology and Clinical Applications, National Heart, Lung, and Blood Institute, National Institutes of Health, Bethesda, MD

* To whom correspondence should be addressed.
David Green, E-mail: d-green{at}northwestern.edu


  Abstract

Studies of DNA may yield important information about atherosclerosis. To determine how often study participants' consent to examine DNA is denied and the factors associated with that denial, information was collected on participants in the US Multiethnic Study of Atherosclerosis (MESA) during 2000-2004. Permission was sought for preparation of DNA, transformation of cells into cell lines, evaluation of genes related to heart and other health conditions, and access to DNA by private companies. Of the 5,494 participants at entry, 897 (16.3%) refused consent for some items and 247 (4.5%) completely denied consent. At a second examination 18 months later, 819 (15.0%) partially refused and 229 (4.2%) completely denied consent. Age among men (odds ratio per 10 years = 0.68, 95% confidence interval: 0.54, 0.85; p = 0.004), ethnicity (odds ratio for African American = 2.34, 95% confidence interval: 1.66, 3.32; p < 0.001), and field center (p < 0.001) were associated with complete denial. For those giving partial consent, the most common item refused was access to DNA by private companies (baseline: 99%; second examination: 90%); younger age, male gender, and African-American ethnicity were associated with refusal. The authors concluded that a small percentage of participants in epidemiologic studies refuse consent for DNA studies, and the majority are concerned about sharing their DNA data with industry.

Keywords: DNA; genetics; informed consent.
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