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AJPH First Look, published online ahead of print Oct 3, 2006
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96/11/1989    most recent
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November 2006, Vol 96, No. 11 | American Journal of Public Health 1989-1995
© 2006 American Public Health Association
DOI: 10.2105/AJPH.2005.076232


RESEARCH AND PRACTICE

Voluntary Participation and Informed Consent to International Genetic Research

Patricia A. Marshall, PhD, Clement A. Adebamowo, MD, ScD, Adebowale A. Adeyemo, MD, Temidayo O. Ogundiran, MD, Mirjana Vekich, MPH, Teri Strenski, MPH, Jie Zhou, BS, T. Elaine Prewitt, DrPH, Richard S. Cooper, MD and Charles N. Rotimi, PhD

At the time of the study, Patricia A. Marshall was with the Department of Bioethics, Case Western Reserve University School of Medicine, Cleveland, Ohio. Charles N. Rotimi, Adebowale A. Adeyemo, and Jie Zhou were with the Department of Community and Family Medicine, National Human Genome Center, College of Medicine, Howard University, Washington, DC; Clement A. Adebamowo and Temidayo O. Ogundiran were with the Division of Oncology, Department of Surgery, University College Hospital, Ibadan, Nigeria. Richard S. Cooper, T. Elaine Prewitt, Mirjana Vekich, and Teri Strenski were with the Department of Preventive Medicine and Epidemiology, Loyola University of Chicago, Maywood, Ill.

Correspondence: Requests for reprints should be sent to Patricia A. Marshall, Department of Bioethics, School of Medicine, Room TA 227, Case Western Reserve University, 10900 Euclid Ave, Cleveland, Ohio 44106–4976 (e-mail: pam20{at}cwru.edu).

Objectives. We compared voluntary participation and comprehension of informed consent among individuals of African ancestry enrolled in similarly designed genetic studies of hypertension in the United States and Nigeria.

Methods. Survey questionnaires were used to evaluate factors associated with voluntariness (the number of people volunteering) and understanding of the study’s genetic purpose. A total of 655 individuals (United States: 348; Nigeria: 307) were interviewed after participation in the genetic studies.

Results. Most US respondents (99%), compared with 72% of Nigerian respondents, reported being told the study purpose. Fewer than half of the respondents at both sites reported that the study purpose was to learn about genetic inheritance of hypertension. Most respondents indicated that their participation was voluntary. In the United States, 97% reported that they could withdraw, compared with 67% in Nigeria. In Nigeria, nearly half the married women reported asking permission from husbands to enroll in the hypertension study; no respondents sought permission from local elders to participate in the study.

Conclusions. Our findings highlight the need for more effective approaches and interventions to improve comprehension of consent for genetic research among ethnically and linguistically diverse populations in all settings.







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