Journal of Genetic Counseling

, Volume 24, Issue 3, pp 491–502 | Cite as

Increasing Participation in Genomic Research and Biobanking Through Community-Based Capacity Building

  • Elizabeth Gross CohnEmail author
  • Maryam Husamudeen
  • Elaine L. Larson
  • Janet K. Williams
Original Research


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.


Genetics 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.

Informed Consent

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.

Animal Studies

No animal studies were carried out by the authors for this article.


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Copyright information

© National Society of Genetic Counselors, Inc. 2014

Authors and Affiliations

  • Elizabeth Gross Cohn
    • 1
    • 4
    Email author
  • Maryam Husamudeen
    • 2
  • Elaine L. Larson
    • 1
  • Janet K. Williams
    • 3
  1. 1.Columbia University, School of NursingNew YorkUSA
  2. 2.The Mosque of Islamic BrotherhoodNew YorkUSA
  3. 3.University of IowaIowa CityUSA
  4. 4.Adelphi UniversityGarden CityUSA

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