To elucidate factors that influence African American willingness to participate in health-related research studies.
The African American Alzheimer disease research study group at North Carolina A&T State University designed an in-person questionnaire and surveyed more than 700 African American adults on their willingness to participate in health-related research studies. The questionnaire was distributed and collected in a nonclinical setting during the years 2008 and 2009. This study was approved by the North Carolina A&T State University Institutional Review Board.
Of the 733 valid respondents, 16% had previously participated in a health-related research study. Of these, more than 90% were willing to participate again in future research studies. Of the 614 who had never participated in a research study, more than 70% expressed willingness to participate. The majority (75%) of experienced research study participants (RSP) were older than 40 years compared with 45% of non–research study participants. Experienced research participants were also twice as likely to have a college degree compared with non–research study participants. Seventy-three percent of non–research study participants were willing to participate in research studies in the future. The factors that were probable impediments to participation included lack of time and trust. Men with knowledge of the Tuskegee Syphilis Study were 50% less likely to be willing to participate compared with those who had not heard of Tuskegee Syphilis Study.
African Americans are willing to participate in health-related research studies. Several factors such as the appropriate incentives, community trust building, outreach, and community partnership creation are necessary for engaging minority participants. Incorporating factors that target African American enrollment in research design and implementation, such as increased training of minority health ambassadors and African American researchers and public health specialists, are needed to better engage minorities across generations, in research.
This article describes factors that influence African American willingness to participate in health-related research studies. Several factors are necessary for engaging minority participants.
Department of Biology, North Carolina A&T State University (Drs Lang and Kelkar, and Ms JR Byrd); College of Arts and Sciences at North Carolina A&T State University (Dr GS Byrd); Biofeedback Laboratory, Chronic Pain Management Program, Psychiatry, Pain and Palliative Care Center, Duke University Bryan Alzheimer's Disease Research Center (Dr Edwards); Human Genomic Programs, John P. Hussman Institute for Human Genomics University of Miami (Dr Pericak-Vance)
Correspondence: Rosalyn Lang, PhD, Department of Biology, North Carolina A&T State University, African Americans & Alzheimer's Disease Research Study, 1601 E. Market St, 120 Hines Hall, Greensboro, North Carolina 27411 (www.ncatad.com).
Funding for this article was made possible (in part) by P20MD000546 from the National Center on Minority Health and Health Disparities. The views expressed in written conference materials or publications and by speakers and moderators do not necessarily reflect the official policies of the Department of Health and Human Services; nor does mention by trade name, commercial practices, or organizations imply endorsement by the US Government.
The authors thank Dr Ruth Phillips, Ms Dora Som-Pimpong, and Ms Takiyah Starks for their efforts in recruiting survey participants, and Drs Phoebe Ajibade and Peggy Bolick for their critical review of the manuscript.
The authors declare no conflicts of interest.