IDEAS home Printed from https://ideas.repec.org/a/hin/jnlnrp/749563.html
   My bibliography  Save this article

Enhancing the Participation of African Americans in Health-Related Genetic Research: Findings of a Collaborative Academic and Community-Based Research Study

Author

Listed:
  • Sandra Millon Underwood
  • Aaron G. Buseh
  • Sheryl T. Kelber
  • Patricia E. Stevens
  • Leolia Townsend

Abstract

The involvement of African Americans in research has long been expressed as a concern by the scientific community. While efforts have been undertaken to identify factors inhibiting the participation of African Americans in health-related research, few efforts have been undertaken to have highlight factors associated with their engagement of health-related research. An exploratory study of factors presumed to be associated with participation in health-related research was conducted among a nonprobability sample of African Americans ( ) from a large urban community in the Midwest. The study was guided by a framework that hypothesized the influence of knowledge, beliefs, and perceptions about genetics and the involvement of providers in decision-making on willingness to participate in health-related genetic research. The results revealed that knowledge, beliefs, and perceptions about genetics and the involvement of providers were associated with willingness to engage in health-related genetic research ( ). The most interesting, however, was that 88.7% of the participants who had not previously been involved in a health-related study who expressed a willingness to participate reported that they “had never been asked.” Study findings suggest the need for research that further examines factors associated with the involvement of African Americans in health-related genetic research.

Suggested Citation

  • Sandra Millon Underwood & Aaron G. Buseh & Sheryl T. Kelber & Patricia E. Stevens & Leolia Townsend, 2013. "Enhancing the Participation of African Americans in Health-Related Genetic Research: Findings of a Collaborative Academic and Community-Based Research Study," Nursing Research and Practice, Hindawi, vol. 2013, pages 1-9, December.
  • Handle: RePEc:hin:jnlnrp:749563
    DOI: 10.1155/2013/749563
    as

    Download full text from publisher

    File URL: http://downloads.hindawi.com/journals/NRP/2013/749563.pdf
    Download Restriction: no

    File URL: http://downloads.hindawi.com/journals/NRP/2013/749563.xml
    Download Restriction: no

    File URL: https://libkey.io/10.1155/2013/749563?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    References listed on IDEAS

    as
    1. Monya Baker, 2012. "Building better biobanks," Nature, Nature, vol. 486(7401), pages 141-146, June.
    2. Francis S. Collins & Eric D. Green & Alan E. Guttmacher & Mark S. Guyer, 2003. "A vision for the future of genomics research," Nature, Nature, vol. 422(6934), pages 835-847, April.
    3. Murphy, J. & Scott, J. & Kaufman, D. & Geller, G. & LeRoy, L. & Hudson, K., 2009. "Public perspectives on informed consent for biobanking," American Journal of Public Health, American Public Health Association, vol. 99(12), pages 2128-2134.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. ZHU Chen & MOTOHASHI Kazuyuki, 2022. "Government R&D spending as a driving force of technology convergence," Discussion papers 22030, Research Institute of Economy, Trade and Industry (RIETI).
    2. Navon, Daniel & Shwed, Uri, 2012. "The chromosome 22q11.2 deletion: From the unification of biomedical fields to a new kind of genetic condition," Social Science & Medicine, Elsevier, vol. 75(9), pages 1633-1641.
    3. Sabatello, Maya & Insel, Beverly J. & Corbeil, Thomas & Link, Bruce G. & Appelbaum, Paul S., 2021. "The double helix at school: Behavioral genetics, disability, and precision education," Social Science & Medicine, Elsevier, vol. 278(C).
    4. Pinar, Candas & Almeling, Rene & Gadarian, Shana Kushner, 2018. "Does genetic risk for common adult diseases influence reproductive plans? Evidence from a national survey experiment in the United States," Social Science & Medicine, Elsevier, vol. 218(C), pages 62-68.
    5. Nchangwi Syntia Munung & Bongani M Mayosi & Jantina de Vries, 2017. "Equity in international health research collaborations in Africa: Perceptions and expectations of African researchers," PLOS ONE, Public Library of Science, vol. 12(10), pages 1-17, October.
    6. Timothy Caulfield & Blake Murdoch, 2017. "Genes, cells, and biobanks: Yes, there’s still a consent problem," PLOS Biology, Public Library of Science, vol. 15(7), pages 1-9, July.
    7. Gail E. Henderson, 2008. "Introducing Social and Ethical Perspectives on Gene—Environment Research," Sociological Methods & Research, , vol. 37(2), pages 251-276, November.
    8. Theresa M. Marteau & Scott Roberts & Susan LaRusse & Robert C. Green, 2005. "Predictive Genetic Testing for Alzheimer's Disease: Impact upon Risk Perception," Risk Analysis, John Wiley & Sons, vol. 25(2), pages 397-404, April.
    9. Melanie Goisauf & Gillian Martin & Heidi Beate Bentzen & Isabelle Budin-Ljøsne & Lars Ursin & Anna Durnová & Liis Leitsalu & Katharine Smith & Sara Casati & Marialuisa Lavitrano & Deborah Mascalzoni &, 2019. "Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research," PLOS ONE, Public Library of Science, vol. 14(9), pages 1-22, September.
    10. Timothy G Lesnick & Spiridon Papapetropoulos & Deborah C Mash & Jarlath Ffrench-Mullen & Lina Shehadeh & Mariza de Andrade & John R Henley & Walter A Rocca & J Eric Ahlskog & Demetrius M Maraganore, 2007. "A Genomic Pathway Approach to a Complex Disease: Axon Guidance and Parkinson Disease," PLOS Genetics, Public Library of Science, vol. 3(6), pages 1-12, June.
    11. Liang Yulan & Kelemen Arpad, 2016. "Bayesian state space models for dynamic genetic network construction across multiple tissues," Statistical Applications in Genetics and Molecular Biology, De Gruyter, vol. 15(4), pages 273-290, August.
    12. Cambrosio, Alberto & Keating, Peter & Schlich, Thomas & Weisz, George, 2006. "Regulatory objectivity and the generation and management of evidence in medicine," Social Science & Medicine, Elsevier, vol. 63(1), pages 189-199, July.
    13. Kathleen T. Hickey & Robert R. Sciacca & Mary S. McCarthy, 2013. "Descriptive survey of Summer Genetics Institute nurse graduates in the USA," Nursing & Health Sciences, John Wiley & Sons, vol. 15(1), pages 3-8, March.
    14. Jonas Lander & Tobias Hainz & Irene Hirschberg & Daniel Strech, 2014. "Current Practice of Public Involvement Activities in Biomedical Research and Innovation: A Systematic Qualitative Review," PLOS ONE, Public Library of Science, vol. 9(12), pages 1-17, December.
    15. Rothwell, Erin & Anderson, Rebecca & Goldenberg, Aaron & Lewis, Michelle H. & Stark, Louisa & Burbank, Matthew & Wong, Bob & Botkin, Jeffrey R., 2012. "Assessing public attitudes on the retention and use of residual newborn screening blood samples: A focus group study," Social Science & Medicine, Elsevier, vol. 74(8), pages 1305-1309.
    16. Miller, Fiona Alice & Ahern, Catherine & Ogilvie, Jacqueline & Giacomini, Mita & Schwartz, Lisa, 2005. "Ruling in and ruling out: Implications of molecular genetic diagnoses for disease classification," Social Science & Medicine, Elsevier, vol. 61(12), pages 2536-2545, December.
    17. Marteau, Theresa M. & Weinman, John, 2006. "Self-regulation and the behavioural response to DNA risk information: A theoretical analysis and framework for future research," Social Science & Medicine, Elsevier, vol. 62(6), pages 1360-1368, March.
    18. O'Doherty, Kieran C. & Burgess, Michael M. & Edwards, Kelly & Gallagher, Richard P. & Hawkins, Alice K. & Kaye, Jane & McCaffrey, Veronica & Winickoff, David E., 2011. "From consent to institutions: Designing adaptive governance for genomic biobanks," Social Science & Medicine, Elsevier, vol. 73(3), pages 367-374, August.

    More about this item

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:hin:jnlnrp:749563. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Mohamed Abdelhakeem (email available below). General contact details of provider: https://www.hindawi.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.