Increasing Participation in Genomic Research and Biobanking Through Community-Based Capacity Building
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| 024 | 7 | 0 | |a 10.1007/s10897-014-9768-6 |2 doi |
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| 245 | 0 | 0 | |a Increasing Participation in Genomic Research and Biobanking Through Community-Based Capacity Building |h [Elektronische Daten] |c [Elizabeth Cohn, Maryam Husamudeen, Elaine Larson, Janet Williams] |
| 520 | 3 | |a 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. | |
| 540 | |a National Society of Genetic Counselors, Inc., 2014 | ||
| 690 | 7 | |a Genetics |2 nationallicence | |
| 690 | 7 | |a Genomics |2 nationallicence | |
| 690 | 7 | |a Health disparities |2 nationallicence | |
| 690 | 7 | |a Community based participatory research |2 nationallicence | |
| 690 | 7 | |a Community capacity building for research |2 nationallicence | |
| 700 | 1 | |a Cohn |D Elizabeth |u Columbia University, School of Nursing, 617 W. 168 Street Room 244, New York, NY, USA |4 aut | |
| 700 | 1 | |a Husamudeen |D Maryam |u The Mosque of Islamic Brotherhood, 55 Saint Nicholas Ave, New York, NY, USA |4 aut | |
| 700 | 1 | |a Larson |D Elaine |u Columbia University, School of Nursing, 617 W. 168 Street Room 244, New York, NY, USA |4 aut | |
| 700 | 1 | |a Williams |D Janet |u University of Iowa, 101 College of Nursing Building, 50 Newtown Road, Iowa City, IA, USA |4 aut | |
| 773 | 0 | |t Journal of Genetic Counseling |d Springer US; http://www.springer-ny.com |g 24/3(2015-06-01), 491-502 |x 1059-7700 |q 24:3<491 |1 2015 |2 24 |o 10897 | |
| 856 | 4 | 0 | |u https://doi.org/10.1007/s10897-014-9768-6 |q text/html |z Onlinezugriff via DOI |
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| 900 | 7 | |a Metadata rights reserved |b Springer special CC-BY-NC licence |2 nationallicence | |
| 908 | |D 1 |a research-article |2 jats | ||
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| 950 | |B NATIONALLICENCE |P 856 |E 40 |u https://doi.org/10.1007/s10897-014-9768-6 |q text/html |z Onlinezugriff via DOI | ||
| 950 | |B NATIONALLICENCE |P 700 |E 1- |a Cohn |D Elizabeth |u Columbia University, School of Nursing, 617 W. 168 Street Room 244, New York, NY, USA |4 aut | ||
| 950 | |B NATIONALLICENCE |P 700 |E 1- |a Husamudeen |D Maryam |u The Mosque of Islamic Brotherhood, 55 Saint Nicholas Ave, New York, NY, USA |4 aut | ||
| 950 | |B NATIONALLICENCE |P 700 |E 1- |a Larson |D Elaine |u Columbia University, School of Nursing, 617 W. 168 Street Room 244, New York, NY, USA |4 aut | ||
| 950 | |B NATIONALLICENCE |P 700 |E 1- |a Williams |D Janet |u University of Iowa, 101 College of Nursing Building, 50 Newtown Road, Iowa City, IA, USA |4 aut | ||
| 950 | |B NATIONALLICENCE |P 773 |E 0- |t Journal of Genetic Counseling |d Springer US; http://www.springer-ny.com |g 24/3(2015-06-01), 491-502 |x 1059-7700 |q 24:3<491 |1 2015 |2 24 |o 10897 | ||