Voluntary Participation and Informed Consent to International Genetic Research Export

@article{citeulike:1698145, abstract = {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. 10.2105/AJPH.2005.076232}, address = {Department of Bioethics, Case Western Reserve University School of Medicine, Cleveland, Ohio 44106-4976, USA. pam20@cwru.edu}, author = {Marshall, Patricia A. and Adebamowo, Clement A. and Adeyemo, Adebowale A. and Ogundiran, Temidayo O. and Vekich, Mirjana and Strenski, Teri and Zhou, Jie and Prewitt, T. Elaine and Cooper, Richard S. and Rotimi, Charles N.}, citeulike-article-id = {1698145}, citeulike-linkout-0 = {http://dx.doi.org/10.2105/AJPH.2005.076232}, citeulike-linkout-1 = {http://www.ajph.org/content/96/11/1989.abstract}, citeulike-linkout-2 = {http://www.ajph.org/content/96/11/1989.full.pdf}, citeulike-linkout-3 = {http://view.ncbi.nlm.nih.gov/pubmed/17018820}, citeulike-linkout-4 = {http://www.hubmed.org/display.cgi?uids=17018820}, day = {1}, doi = {10.2105/AJPH.2005.076232}, issn = {1541-0048}, journal = {Am J Public Health}, keywords = {comprehension, informed-consent}, month = {November}, number = {11}, pages = {1989--1995}, posted-at = {2009-10-05 03:50:12}, priority = {4}, title = {Voluntary Participation and Informed Consent to International Genetic Research}, url = {http://dx.doi.org/10.2105/AJPH.2005.076232}, volume = {96}, year = {2006} }

TY - JOUR ID - citeulike:1698145 L3 - citeulike-article-id:1698145 N2 - 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. 10.2105/AJPH.2005.076232 IS - 11 JF - Am J Public Health SN - 1541-0048 AD - Department of Bioethics, Case Western Reserve University School of Medicine, Cleveland, Ohio 44106-4976, USA. pam20@cwru.edu EP - 1995 TI - Voluntary Participation and Informed Consent to International Genetic Research VL - 96 SP - 1989 KW - comprehension KW - informed-consent AU - Marshall, Patricia AU - Adebamowo, Clement AU - Adeyemo, Adebowale AU - Ogundiran, Temidayo AU - Vekich, Mirjana AU - Strenski, Teri AU - Zhou, Jie AU - Prewitt, Elaine AU - Cooper, Richard AU - Rotimi, Charles PY - 2006/11/01/ UR - http://dx.doi.org/10.2105/AJPH.2005.076232 ER -