caa a22 4500 605544506 CHVBK 20210128100931.0 cr unu---uuuuu 210128e20150601xx s 000 0 eng 10.1007/s10897-014-9768-6 doi (NATIONALLICENCE)springer-10.1007/s10897-014-9768-6 Increasing Participation in Genomic Research and Biobanking Through Community-Based Capacity Building [Elektronische Daten] [Elizabeth Cohn, Maryam Husamudeen, Elaine Larson, Janet Williams] Achieving equitable minority representation in genomic biobanking is one of the most difficult challenges faced by researchers today. Capacity building—a framework for research that includes collaborations and on-going engagement—can be used to help researchers, clinicians and communities better understand the process, utility, and clinical application of genomic science. The purpose of this exploratory descriptive study was to examine factors that influence the decision to participate in genomic research, and identify essential components of capacity building with a community at risk of being under-represented in biobanks. Results of focus groups conducted in Central Harlem with 46 participants were analyzed by a collaborative team of community and academic investigators using content analysis and AtlisTi. Key themes identified were: (1) the potential contribution of biobanking to individual and community health, for example the effect of the environment on health, (2) the societal context of the science, such as DNA criminal databases and paternity testing, that may affect the decision to participate, and (3) the researchers' commitment to community health as an outcome of capacity building. These key factors can contribute to achieving equity in biobank participation, and guide genetic specialists in biobank planning and implementation. National Society of Genetic Counselors, Inc., 2014 Genetics nationallicence Genomics nationallicence Health disparities nationallicence Community based participatory research nationallicence Community capacity building for research nationallicence Cohn Elizabeth Columbia University, School of Nursing, 617 W. 168 Street Room 244, New York, NY, USA aut Husamudeen Maryam The Mosque of Islamic Brotherhood, 55 Saint Nicholas Ave, New York, NY, USA aut Larson Elaine Columbia University, School of Nursing, 617 W. 168 Street Room 244, New York, NY, USA aut Williams Janet University of Iowa, 101 College of Nursing Building, 50 Newtown Road, Iowa City, IA, USA aut Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/3(2015-06-01), 491-502 1059-7700 24:3<491 2015 24 10897 https://doi.org/10.1007/s10897-014-9768-6 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s10897-014-9768-6 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Cohn Elizabeth Columbia University, School of Nursing, 617 W. 168 Street Room 244, New York, NY, USA aut NATIONALLICENCE 700 1- Husamudeen Maryam The Mosque of Islamic Brotherhood, 55 Saint Nicholas Ave, New York, NY, USA aut NATIONALLICENCE 700 1- Larson Elaine Columbia University, School of Nursing, 617 W. 168 Street Room 244, New York, NY, USA aut NATIONALLICENCE 700 1- Williams Janet University of Iowa, 101 College of Nursing Building, 50 Newtown Road, Iowa City, IA, USA aut NATIONALLICENCE 773 0- Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/3(2015-06-01), 491-502 1059-7700 24:3<491 2015 24 10897