Strategies for Enrollment of African Americans into Cancer Genetic Studies

被引:16
作者
Ewing, Altovise [1 ]
Thompson, Nicole [2 ]
Ricks-Santi, Luisel [3 ]
机构
[1] Johns Hopkins Univ, Bloomberg Sch Publ Hlth, Dept Hlth Behav & Soc, Baltimore, MD 21205 USA
[2] Howard Univ, Howard Univ Hosp, Canc Genet Program, Ctr Canc, Washington, DC 20060 USA
[3] Hampton Univ, Canc Res Ctr, Hampton, VA 23668 USA
关键词
African Americans; Genetic counseling; Cancer genetic research; Research strategies; MINORITY RECRUITMENT; INFORMED-CONSENT; CLINICAL-TRIALS; PARTICIPATION; VIEWS; POPULATIONS; DISPARITIES; INTENTIONS; EXPERIENCE; PHYSICIANS;
D O I
10.1007/s13187-014-0669-z
中图分类号
R73 [肿瘤学];
学科分类号
100214 ;
摘要
The enrollment of ethnically diverse populations in genetic and genomic research is vital to the parity of benefits resulting from research with biological specimens. Herein, we discuss strategies that may effectively improve the recruitment of African Americans into genetics studies. Specifically, we show that engaging physicians, genetic counselors, and community members is essential to enrolling participants into genetic studies. We demonstrate the impact of utilizing African American genetic counselors on study enrollment rates and implementing a two-page consent form that improved on a lengthy and inefficient consenting process. Lastly, we provided participants with the option of donating saliva instead of blood for study purposes. Descriptive statistics were used. Using the aforementioned strategies, recruitment goals for the Genetic Basis of Breast Cancer Subtype Study at Howard University (HU) were met. Our overall results yielded 182 participants in 18 months. Recruitment strategies that involve the engagement of physicians, genetic counselors, and community members may help researchers increase the enrollment of ethnically diverse and hard-to-reach participants into genetic studies.
引用
收藏
页码:108 / 115
页数:8
相关论文
共 47 条
  • [1] [Anonymous], 1978, BELM REP ETH PRINC G
  • [2] [Anonymous], I REV BOARD GUID
  • [3] Increasing voluntary HIV testing by offering oral tests in incarcerated populations
    Bauserman, RL
    Ward, MA
    Eldred, L
    Swetz, A
    [J]. AMERICAN JOURNAL OF PUBLIC HEALTH, 2001, 91 (08) : 1226 - 1229
  • [4] Developing a Simplified Consent Form for Biobanking
    Beskow, Laura M.
    Friedman, Joelle Y.
    Hardy, N. Chantelle
    Lin, Li
    Weinfurt, Kevin P.
    [J]. PLOS ONE, 2010, 5 (10):
  • [5] Simplifying informed consent for biorepositories: Stakeholder perspectives
    Beskow, Laura M.
    Friedman, Joelle Y.
    Hardy, N. Chantelle
    Lin, Li
    Weinfurt, Kevin P.
    [J]. GENETICS IN MEDICINE, 2010, 12 (09) : 567 - 572
  • [6] The role of race and trust in tissue/blood donation for genetic research
    Bussey-Jones, Jada
    Garrett, Joanne
    Henderson, Gail
    Moloney, Mairead
    Blumenthal, Connie
    Corbie-Smith, Giselle
    [J]. GENETICS IN MEDICINE, 2010, 12 (02) : 116 - 121
  • [7] Evaluation findings from genetics and family health history community-based workshops for African Americans
    Butty J.-A.M.
    Richardson F.
    Mouton C.P.
    Royal C.D.M.
    Green R.D.
    Munroe K.-A.
    [J]. Journal of Community Genetics, 2012, 3 (1) : 1 - 12
  • [8] Recruiting Intergenerational African American Males for Biomedical Research Studies: A Major Research Challenge
    Byrd, Goldie S.
    Edwards, Christopher L.
    Kelkar, Vinaya A.
    Phillips, Ruth G.
    Byrd, Jennifer R.
    Pim-Pong, Dora Som
    Starks, Takiyah D.
    Taylor, Ashleigh L.
    Mckinley, Raechel E.
    Li, Yi-Ju
    Pericak-Vance, Margaret
    [J]. JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION, 2011, 103 (06) : 480 - 487
  • [9] Race, gender, and partnership in the patient-physician relationship
    Cooper-Patrick, L
    Gallo, JJ
    Gonzales, JJ
    Vu, HT
    Powe, NR
    Nelson, C
    Ford, DE
    [J]. JAMA-JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION, 1999, 282 (06): : 583 - 589
  • [10] Attitudes and beliefs of African Americans toward participation in medical research
    Corbie-Smith, G
    Thomas, SB
    Williams, MV
    Moody-Ayers, S
    [J]. JOURNAL OF GENERAL INTERNAL MEDICINE, 1999, 14 (09) : 537 - 546