Increasing Participation in Genomic Research and Biobanking Through Community-Based Capacity Building
- 425 Downloads
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.
KeywordsGenetics Genomics Health disparities Community based participatory research Community capacity building for research
Disclosures and Acknowledgments
Funding for this study was provided by the Robert Wood Johnson Foundation Nurse Faculty Scholars Program, the National Human Genome Research Institute Grant Number P50 HG007257 and the National Center for Advancing Translational Sciences, National Institutes of Health though Grant Number UL1 TR000040. The content is solely the responsibility of the authors and does not necessarily represent official views of the NIH.
The authors would like to acknowledge the members of the Harlem Community who participated in the focus groups, Christina Pineda, Patrina Saxton and Taylor Ely for their contribution to field notes and data analysis, The Reverend Dr. Calvin O. Butts III, Mrs. Patricia R. Butts for support and facilitation of this research study and Dr. Fleda Mask Jackson for review of the focus group guide. The authors would additionally like to thank the faculty and staff the Feinstein Institute for Medical Research at North Shore–Long Island Jewish Medical Center, Dr. Peter K. Gregersen and Marlena Kern for guidance in the development of the study.
Conflict of Interest Statement
Elizabeth Gross Cohn, Maryam Husamudeen, Elaine L. Larson and Janet K. Williams declares that they have no conflict of interest.
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients being included in this study.
No animal studies were carried out by the authors for this article.
- Awadalla, P., Boileau, C., Payette, Y., Idaghdour, Y., Goulet, J. P., Knoppers, B., & on behalf of the CARTaGENE Project. (2013). Cohort profile of the CARTaGENE study: Quebec’s population-based biobank for public health and personalized genomics. International Journal of Epidemiology, 42(5), 1285–1299. doi: 10.1093/ije/dys160.CrossRefPubMedGoogle Scholar
- Clinical and Translational Science Awards Consortium Community Engagement Key Function Committee Task Force on the Principles of Community Engagement. (2011). Principles of community engagement (2nd ed.). Washington: Department of Health and Human Services.Google Scholar
- Colorado Bureau of Investigation. (2013). Colorado DNA familial search policy. from http://www.denverda.org/DNA_Documents/Policies/CO%20FS%20Policy.pdf.
- Commonwealth of Virginia. (2013). policy relating to familial DNA searching. from http://www.denverda.org/DNA_Documents/Policies/VA%20FS%20Policy.pdf.
- Frieden, T. R., Centers for Disease, C., & Prevention. (2011). Forward: CDC health disparities and inequalities report - United States, 2011. MMWR Surveill Summ, 60 Suppl, 1–2.Google Scholar
- Glasgow, R. E., Askew, S., Purcell, P., Levine, E., Warner, E. T., Stange, K. C., & Bennett, G. G. (2013). Use of RE-AIM to address health inequities: application in a low-income community health center based weight loss and hypertension self-management program. Translational Behaviour Medicine, 3(2), 200–210. doi: 10.1007/s13142-013-0201-8.CrossRefGoogle Scholar
- Gracia-Aznarez, F. J., Fernandez, V., Pita, G., Peterlongo, P., Dominguez, O., de la Hoya, M., & Benitez, J. (2013). Whole exome sequencing suggests much of non-BRCA1/BRCA2 familial breast cancer is due to moderate and low penetrance susceptibility alleles. PLoS One, 8(2), e55681. doi: 10.1371/journal.pone.0055681.PubMedCentralCrossRefPubMedGoogle Scholar
- Hacker, K., Tendulkar, S. A., Rideout, C., Bhuiya, N., Trinh-Shevrin, C., Savage, C. P., & DiGirolamo, A. (2012). Community capacity building and sustainability: outcomes of community-based participatory research. Progress in Community Health Partnerships, 6(3), 349–360. doi: 10.1353/cpr.2012.0048.PubMedCentralCrossRefPubMedGoogle Scholar
- Halbert, C. H., Kessler, L., Collier, A., Weathers, B., Stopfer, J., Domchek, S., & McDonald, J. A. (2012). Low rates of African American participation in genetic counseling and testing for BRCA1/2 mutations: racial disparities or just a difference? Journal of Genetic Counseling, 21(5), 676–683. doi: 10.1007/s10897-012-9485-y.PubMedCentralCrossRefPubMedGoogle Scholar
- Harlem Hospital Center, N. Y. C. H. a. H. C. (2013). Harlem Hospital Center 2013 needs assessment and implementation strategy.Google Scholar
- Hilbers, F. S., Meijers, C. M., Laros, J. F., van Galen, M., Hoogerbrugge, N., Vasen, H. F., & Devilee, P. (2013). Exome sequencing of germline DNA from non-BRCA1/2 familial breast cancer cases selected on the basis of aCGH tumor profiling. PLoS One, 8(1), e55734. doi: 10.1371/journal.pone.0055734.PubMedCentralCrossRefPubMedGoogle Scholar
- Jackson, F. M. (2013). Focus group guide from http://drfledamjackson.com/biography.
- Khoury, M. J., Clauser, S. B., Freedman, A. N., Gillanders, E. M., Glasgow, R. E., Klein, W. M., & Schully, S. D. (2011). Population sciences, translational research, and the opportunities and challenges for genomics to reduce the burden of cancer in the 21st century. Cancer Epidemiology, Biomarkers and Prevention, 20(10), 2105–2114. doi: 10.1158/1055-9965.EPI-11-0481.PubMedCentralCrossRefPubMedGoogle Scholar
- Kittles, R. (2012). Genes and environments: moving toward personalized medicine in the context of health disparities. Ethnicity and Disease, 22(3 Suppl 1), S1-43–46.Google Scholar
- Kittles, R. A., Baffoe-Bonnie, A. B., Moses, T. Y., Robbins, C. M., Ahaghotu, C., Huusko, P., & Carpten, J. D. (2006). A common nonsense mutation in EphB2 is associated with prostate cancer risk in African American men with a positive family history. Journal of Medical Genetics, 43(6), 507–511. doi: 10.1136/jmg.2005.035790.PubMedCentralCrossRefPubMedGoogle Scholar
- Koskan, A., Arevalo, M., Gwede, C. K., Quinn, G. P., Noel-Thomas, S. A., Luque, J. S., & Meade, C. D. (2012). Ethics of clear health communication: applying the CLEAN Look approach to communicate biobanking information for cancer research. Journal of Health Care for the Poor and Underserved, 23(4 Suppl), 58–66. doi: 10.1353/hpu.2012.0192.PubMedCentralCrossRefPubMedGoogle Scholar
- Krippendorff, K. (2013). Content analysis: an introduction to its methodology (3rd ed.). Los Angeles: Sage.Google Scholar
- Krueger, R., & Casey, M. A. (2009). Focus groups: a practical guide for applied research (4th ed.). Thousand Oaks: Sage.Google Scholar
- Kwon, H. L., Ortiz, B., Swaner, R., Shoemaker, K., Jean-Louis, B., Northridge, M. E., & Harlem Children’s Zone Asthma, I. (2006). Childhood asthma and extreme values of body mass index: the Harlem children’s zone asthma initiative. Journal of Urban Health, 83(3), 421–433. doi: 10.1007/s11524-006-9050-9.PubMedCentralCrossRefPubMedGoogle Scholar
- Lemke, A. A., Wu, J. T., Waudby, C., Pulley, J., Somkin, C. P., & Trinidad, S. B. (2010). Community engagement in biobanking: Experiences from the eMERGE Network. Genomics Society Policy, 6(3), 35–52.Google Scholar
- Luque, J. S., Quinn, G. P., Montel-Ishino, F. A., Arevalo, M., Bynum, S. A., Noel-Thomas, S., & Tampa Bay Community Cancer Network, P. (2012). Formative research on perceptions of biobanking: what community members think. Journal of Cancer Education, 27(1), 91–99. doi: 10.1007/s13187-011-0275-2.PubMedCentralCrossRefPubMedGoogle Scholar
- Millon Underwood, S., Buseh, A. G., Kelber, S. T., Stevens, P. E., & Townsend, L. (2013). Enhancing the participation of african americans in health-related genetic research: findings of a collaborative academic and community-based research study. Nursing Research Practice, 2013, 749563. doi: 10.1155/2013/749563.PubMedCentralCrossRefPubMedGoogle Scholar
- Monda, K. L., Chen, G. K., Taylor, K. C., Palmer, C., Edwards, T. L., Lange, L. A., & Haiman, C. A. (2013). A meta-analysis identifies new loci associated with body mass index in individuals of African ancestry. Nature Genetics, 45(6), 690–696. doi: 10.1038/ng.2608.PubMedCentralCrossRefPubMedGoogle Scholar
- Morgan, D. L., Krueger, R. A., & King, J. A. (1998). Focus group kit. Thousand Oaks: SAGE Publications.Google Scholar
- National DNA Index System-Combined DNA Index System (2013). Retrieved October 30, 2013, from http://www.fbi.gov/about-us/lab/biometric-analysis/codis/ndis-statistics/#Nebraska.
- Nicholas, S. W., Jean-Louis, B., Ortiz, B., Northridge, M., Shoemaker, K., Vaughan, R., & Hutchinson, V. (2005). Addressing the childhood asthma crisis in Harlem: the Harlem children’s zone asthma initiative. American Journal of Public Health, 95(2), 245–249. doi: 10.2105/AJPH.2004.042705.PubMedCentralCrossRefPubMedGoogle Scholar
- Patel, Y. R., Carr, K. A., Magjuka, D., Mohammadi, Y., Dropcho, E. F., Reed, A. D., & Hahn, N. M. (2012). Successful recruitment of healthy African American men to genomic studies from high-volume community health fairs: implications for future genomic research in minority populations. Cancer, 118(4), 1075–1082. doi: 10.1002/cncr.26328.CrossRefPubMedGoogle Scholar
- Rosenkotter, N., Vondeling, H., Blancquaert, I., Mekel, O. C., Kristensen, F. B., & Brand, A. (2011). The contribution of health technology assessment, health needs assessment, and health impact assessment to the assessment and translation of technologies in the field of public health genomics. Public Health Genomics, 14(1), 43–52. doi: 10.1159/000318317.CrossRefPubMedGoogle Scholar
- Schuster, B., Knies, K., Stoepker, C., Velleuer, E., Friedl, R., Gottwald-Muhlhauser, B., & Schindler, D. (2013). Whole exome sequencing reveals uncommon mutations in the recently identified Fanconi anemia gene SLX4/FANCP. Human Mutation, 34(1), 93–96. doi: 10.1002/humu.22221.CrossRefPubMedGoogle Scholar
- Shiber, J. R., & Foxwell, M. M., Jr. (2013). The immortal life of Henrietta Lacks. The Pharos of Alpha Omega Alpha-Honor Medical Society, 76(2), 53.Google Scholar
- Spruill, I. (2004). Project Sugar: a recruitment model for successful African-American participation in health research. Journal of National Black Nurses Association, 15(2), 48–53.Google Scholar
- State of New York. (2103). CODAS.Google Scholar
- Susman, E. (2010). Early engagement helps overcome skepticism about Biobanking. Retrieved October 31, 2013 from http://www.cancernetwork.com/articles/early-engagement-healthcare-professionals-helps-overcome-public-skepticism-about-biobanking.
- Texas CODIS. (2013). Retrieved October 30, 2013, from http://www.denverda.org/DNA_Documents/Familial_DNA/Tx%20FS%20policy.pdf.
- Thompson, T., Seo, J., Griffith, J., Baxter, M., James, A., & Kaphingst, K. A. (2013). “You don’t have to keep everything on paper”: African American women’s use of family health history tools. Journal of Community Genetics, 4(2), 251–261. doi: 10.1007/s12687-013-0138-0.PubMedCentralCrossRefPubMedGoogle Scholar
- Wormser, D. (2011). BioBank seeks thousands of minority participants for study. from http://www.utsouthwestern.edu/newsroom/center-times/year-2011/september/ct-biobank.html.