A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders.

To assess the experienced or perceived barriers and facilitators to health research participation for major US racial/ethnic minority populations, we conducted a systematic review of qualitative and quantitative studies from a search on PubMed and Web of Science from January 2000 to December 2011. With 44 articles included in the review, we found distinct and shared barriers and facilitators. Despite different expressions of mistrust, all groups represented in these studies were willing to participate for altruistic reasons embedded in cultural and community priorities. Greater comparative understanding of barriers and facilitators to racial/ethnic minorities' research participation can improve population-specific recruitment and retention strategies and could better inform future large-scale prospective quantitative and in-depth ethnographic studies.

[1]  M. Antoni,et al.  Participation in Cancer Clinical Trials , 2014, Medical decision making : an international journal of the Society for Medical Decision Making.

[2]  S. Mohammed,et al.  Racism and Health I , 2013, The American behavioral scientist.

[3]  Dean Giustini,et al.  Google Scholar is not enough to be used alone for systematic reviews , 2013, Online journal of public health informatics.

[4]  Leroi S. Hicks,et al.  A systematic review of community-based participatory research to enhance clinical trials in racial and ethnic minority groups. , 2012, Health services research.

[5]  W. McCaskill-Stevens,et al.  A critical review of the enrollment of black patients in cancer clinical trials. , 2012, American Society of Clinical Oncology educational book. American Society of Clinical Oncology. Annual Meeting.

[6]  S. Swain,et al.  A pilot study of a culturally targeted video intervention to increase participation of African American patients in cancer clinical trials. , 2012, The oncologist.

[7]  W. Klein,et al.  The state of research on racial/ethnic discrimination in the receipt of health care. , 2012, American journal of public health.

[8]  A. Noone,et al.  Assessing the Awareness of and Willingness to Participate in Cancer Clinical Trials Among Immigrant Latinos , 2012, Journal of Community Health.

[9]  J. Fisher,et al.  Challenging assumptions about minority participation in US clinical research. , 2011, American journal of public health.

[10]  D. Danner,et al.  African American Participation in Alzheimer’s Disease Research That Includes Brain Donation , 2011, American journal of Alzheimer's disease and other dementias.

[11]  C. Voytek,et al.  Selectively willing and conditionally able: HIV vaccine trial participation among women at "high risk" of HIV infection. , 2011, Vaccine.

[12]  K. Glanz,et al.  Preconsent education about research processes improved African Americans' willingness to participate in clinical research. , 2011, Journal of clinical epidemiology.

[13]  C. Grady,et al.  Exploring Decision‐Making of HIV‐Infected Hispanics and African Americans Participating in Clinical Trials , 2011, The Journal of the Association of Nurses in AIDS Care : JANAC.

[14]  H. Rosen,et al.  Recruitment of Chinese American elders into dementia research: the UCSF ADRC experience. , 2011, The Gerontologist.

[15]  J. Cappella,et al.  Research Participation Among Asian American Women at Risk for Cervical Cancer: Exploratory Pilot of Barriers and Enhancers , 2011, Journal of Immigrant and Minority Health.

[16]  N. Kressin,et al.  Belief in AIDS Origin Conspiracy Theory and Willingness to Participate in Biomedical Research Studies: Findings in Whites, Blacks, and Hispanics in Seven Cities Across Two Surveys , 2011, HIV clinical trials.

[17]  D. Scharff,et al.  More than Tuskegee: Understanding Mistrust about Research Participation , 2010, Journal of health care for the poor and underserved.

[18]  B. Rapkin,et al.  Beliefs about participating in research among a sample of minority persons living with HIV/AIDS in New York City. , 2010, AIDS patient care and STDs.

[19]  D. Defreitas.  Race and HIV clinical trial participation. , 2010, Journal of the National Medical Association.

[20]  A. Moyer,et al.  Predictors of awareness of clinical trials and feelings about the use of medical information for research in a nationally representative US sample , 2010, Ethnicity & health.

[21]  G. Sadler,et al.  Adapting a Program to Inform African American and Hispanic American Women About Cancer Clinical Trials , 2010, Journal of Cancer Education.

[22]  David R Williams,et al.  Race, socioeconomic status, and health: Complexities, ongoing challenges, and research opportunities , 2010, Annals of the New York Academy of Sciences.

[23]  A. Evans,et al.  HIV-infected adults from minority ethnic groups are willing to participate in research if asked. , 2009, AIDS patient care and STDs.

[24]  D. Moher,et al.  Preferred reporting items for systematic reviews and meta-analyses: the PRISMA Statement , 2009, BMJ : British Medical Journal.

[25]  A. Khoury,et al.  Knowledge, Attitudes, and Practices of Underserved Women in the Rural South Toward Breast Cancer Prevention and Detection , 2009, Family & community health.

[26]  J. Ioannidis,et al.  The PRISMA Statement for Reporting Systematic Reviews and Meta-Analyses of Studies That Evaluate Health Care Interventions: Explanation and Elaboration , 2009, BMJ : British Medical Journal.

[27]  Azure B. Thompson,et al.  An Exploration of Attitudes Among Black Americans Towards Psychiatric Genetic Research , 2009, Psychiatry.

[28]  Susanne Mikki,et al.  Google Scholar compared to Web of Science. A Literature Review , 2009 .

[29]  David R. Williams,et al.  Discrimination and racial disparities in health: evidence and needed research , 2009, Journal of Behavioral Medicine.

[30]  Jill A Fisher,et al.  Medical Research for Hire: The Political Economy of Pharmaceutical Clinical Trials , 2008 .

[31]  R. Katz,et al.  The Legacy of the Tuskegee Syphilis Study: Assessing its Impact on Willingness to Participate in Biomedical Studies , 2008, Journal of health care for the poor and underserved.

[32]  Mark D. Huffman,et al.  Factors associated with enrollment of African Americans into a clinical trial: results from the African American study of kidney disease and hypertension. , 2008, Contemporary clinical trials.

[33]  S. McCurdy,et al.  Decisions to participate in research: views of underserved minority drug users with or at risk for HIV , 2008, AIDS care.

[34]  Suzanne Christopher,et al.  Building and maintaining trust in a community-based participatory research partnership. , 2008, American journal of public health.

[35]  Keith C. Norris,et al.  Community-partnered approaches to enhance chronic kidney disease awareness, prevention, and early intervention. , 2008, Advances in chronic kidney disease.

[36]  Shari Bolen,et al.  Barriers to recruiting underrepresented populations to cancer clinical trials: A systematic review , 2008, Cancer.

[37]  A. Gifford,et al.  Perceptions of barriers and facilitators to participation in clinical trials in HIV-positive Latinas: a pilot study. , 2007, Journal of women's health.

[38]  Mary Shultz,et al.  Comparing test searches in PubMed and Google Scholar. , 2007, Journal of the Medical Library Association : JMLA.

[39]  J. Fisher.  “Ready-to-Recruit” or “Ready-to-Consent” Populations? Informed Consent and the Limits of Subject Autonomy , 2007, Qualitative inquiry : QI.

[40]  Roger B. Davis,et al.  Participation in research studies: factors associated with failing to meet minority recruitment goals. , 2007, Annals of epidemiology.

[41]  J. Elmore,et al.  Attitudes Toward Participation in Breast Cancer Randomized Clinical Trials in the African American Community: A Focus Group Study , 2007, Cancer nursing.

[42]  L. Newman,et al.  Perceptions of clinical research participation among African American women. , 2007, Journal of women's health.

[43]  Cary P. Gross,et al.  Recruiting Vulnerable Populations into Research: A Systematic Review of Recruitment Interventions , 2007, Journal of General Internal Medicine.

[44]  M. Hall,et al.  Attitudes of African American and Low Socioeconomic Status White Women toward Medical Research , 2007, Journal of health care for the poor and underserved.

[45]  H. Washington,et al.  Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present , 2007 .

[46]  G. Gee,et al.  A nationwide study of discrimination and chronic health conditions among Asian Americans. , 2007, American journal of public health.

[47]  N. Duan,et al.  HIV vaccine trial preparedness among Spanish-speaking Latinos in the US , 2007, AIDS care.

[48]  R. Belue,et al.  African Americans and participation in clinical trials: differences in beliefs and attitudes by gender. , 2006, Contemporary clinical trials.

[49]  R. Katz,et al.  The Tuskegee Legacy Project: Willingness of Minorities to Participate in Biomedical Research , 2006, Journal of health care for the poor and underserved.

[50]  S. van der Meij,et al.  The fight against stigma: An overview of stigma-reduction strategies and interventions , 2006, Psychology, health & medicine.

[51]  J. Izzo,et al.  Device-guided breathing to lower blood pressure: case report and clinical overview. , 2006, MedGenMed : Medscape general medicine.

[52]  J. Kissell,et al.  Self-assessment of cultural attitudes and competence of clinical investigators to enhance recruitment and participation of minority populations in research. , 2006, Journal of the National Medical Association.

[53]  Keith C. Norris,et al.  An ethno-medical perspective on research participation: a qualitative pilot study. , 2006, MedGenMed : Medscape general medicine.

[54]  K. Mooney,et al.  Factors that influence Spanish‐ and English‐speaking participants' decision to enroll in cancer randomized clinical trials , 2006, Psycho-oncology.

[55]  N. Powe,et al.  Effectiveness of strategies to recruit underrepresented populations into cancer clinical trials , 2006, Clinical trials.

[56]  Renee F Wilson,et al.  Defining “Success” in recruitment of underrepresented populations to cancer clinical trials , 2006, Cancer.

[57]  A. Yancey,et al.  Effective recruitment and retention of minority research participants. , 2006, Annual review of public health.

[58]  Danielle S. Seiden,et al.  HIV Vaccine Trial Participation Among Ethnic Minority Communities: Barriers, Motivators, and Implications for Recruitment , 2006, Journal of acquired immune deficiency syndromes.

[59]  Kumanan Wilson,et al.  Barriers to participation in clinical trials of cancer: a meta-analysis and systematic review of patient-reported factors. , 2006, The Lancet. Oncology.

[60]  C. Drescher,et al.  Clinical trials: Understanding and perceptions of female Chinese‐American cancer patients , 2005, Cancer.

[61]  E. Emanuel,et al.  Are Racial and Ethnic Minorities Less Willing to Participate in Health Research? , 2005, PLoS medicine.

[62]  Tung T. Nguyen,et al.  Participation of Asian-American women in cancer treatment research: a pilot study. , 2005, Journal of the National Cancer Institute. Monographs.

[63]  S. Gregorich,et al.  Factors affecting participation in a breast cancer risk reduction telephone survey among women from four racial/ethnic groups. , 2005, Preventive medicine.

[64]  Zachary Rowe,et al.  Community-Based Participatory Research: Lessons Learned from the Centers for Children’s Environmental Health and Disease Prevention Research , 2005, Environmental health perspectives.

[65]  U. Warda,et al.  STRATEGIES TO RECRUIT AND RETAIN OLDER FILIPINO–AMERICAN IMMIGRANTS FOR A CANCER SCREENING STUDY , 2005, Journal of Community Health.

[66]  Meredith Minkler,et al.  Community-based research partnerships: Challenges and opportunities , 2005, Journal of Urban Health.

[67]  A. Must,et al.  Susceptibility of Elderly Asian Immigrants to Persuasion With Respect to Participation in Research , 2005, Journal of Immigrant Health.

[68]  C. Simon,et al.  "Step into My Zapatos, Doc": Understanding and Reducing Communication Disparities in the Multicultural Informed Consent Setting , 2005, Perspectives in biology and medicine.

[69]  E. Tull,et al.  The relationship of internalized racism to body fat distribution and insulin resistance among African adolescent youth. , 2004, Journal of the National Medical Association.

[70]  M. Minkler.  Ethical Challenges for the “Outside” Researcher in Community-Based Participatory Research , 2004, Health education & behavior : the official publication of the Society for Public Health Education.

[71]  Karl Atkin,et al.  Why ethnic minority groups are under-represented in clinical trials: a review of the literature. , 2004, Health & social care in the community.

[72]  D. Mitschke,et al.  Increasing participation in cancer research: insights from Native Hawaiian women in medically underserved communities. , 2004, Pacific health dialog.

[73]  C. T. Veit.  A Single Mathematical Model Predicts Physicians’ Recommendations and Postmenopausal Women’s Decisions to Participate in a Clinical Trial to Prevent Breast Cancer or Coronary Heart Disease , 2004, Medical decision making : an international journal of the Society for Medical Decision Making.

[74]  G. Corbie-Smith,et al.  Closing the circle between minority inclusion in research and health disparities. , 2004, Archives of internal medicine.

[75]  Harlan M Krumholz,et al.  Participation in cancer clinical trials: race-, sex-, and age-based disparities. , 2004, JAMA.

[76]  Sandra Crouse Quinn,et al.  Ethics in public health research: protecting human subjects: the role of community advisory boards. , 2004, American journal of public health.

[77]  K. Braun,et al.  Improving Native Hawaiian Health Through Community-Based Participatory Research , 2003 .

[78]  G. Bernal,et al.  Including Ethnic Minorities in Mental Health Intervention Research: A Practical Approach to a Long-Standing Problem , 2003, Culture, medicine and psychiatry.

[79]  O. Corrigan,et al.  Empty ethics: the problem with informed consent. , 2003, Sociology of health & illness.

[80]  Adrienne Y. Stith,et al.  Unequal treatment: confronting racial and ethnic disparities in health care. , 2003 .

[81]  Sharyne Shiu-Thornton.  Addressing cultural competency in research: integrating a community-based participatory research approach. , 2003, Alcoholism, clinical and experimental research.

[82]  Stephen B. Thomas,et al.  Distrust, race, and research. , 2002, Archives of internal medicine.

[83]  L. V. Powell,et al.  Response to direct and indirect recruitment for a randomised dental clinical trial in a multicultural population of elders. , 2002, Community dentistry and oral epidemiology.

[84]  Patricia L. Marshall,et al.  The Decision Dynamics of Clinical Research: The Context and Process of Informed Consent , 2002, Medical care.

[85]  Harlan M Krumholz,et al.  Representation of the elderly, women, and minorities in heart failure clinical trials. , 2002, Archives of internal medicine.

[86]  Charles F Lynch,et al.  Racial differences in factors that influence the willingness to participate in medical research studies. , 2002, Annals of epidemiology.

[87]  Marilyn M. Skaff,et al.  Lessons in cultural competence: Adapting research methodology for Latino participants , 2002 .

[88]  D. Banks,et al.  Participation of racial/ethnic groups in clinical trials and race-related labeling: a review of new molecular entities approved 1995-1999. , 2001, Journal of the National Medical Association.

[89]  C. Earl,et al.  The Significance of Trust in the Research Consent Process with African Americans , 2001, Western journal of nursing research.

[90]  Jim Blascovich,et al.  African Americans and High Blood Pressure: The Role of Stereotype Threat , 2001, Psychological science.

[91]  S. Quinn,et al.  African Americans' views on research and the Tuskegee Syphilis Study. , 2001, Social science & medicine.

[92]  W. Byrd,et al.  An American Health Dilemma: A Medical History of African Americans and the Problem of Race-Beginnings to 1900 , 2000, Nursing History Review.

[93]  C P Jones,et al.  Levels of racism: a theoretic framework and a gardener's tale. , 2000, American journal of public health.

[94]  S. Quinn,et al.  Factors affecting African-American participation in AIDS research. , 2000 .

[95]  J. Lawrence.  The Indian Health Service and the Sterilization of Native American Women , 2000, American Indian quarterly.

[96]  Giselle Corbie-Smith,et al.  Attitudes and beliefs of african americans toward participation in medical research , 1999, Journal of General Internal Medicine.

[97]  S. Davis,et al.  Practicing participatory research in American Indian communities. , 1999, The American journal of clinical nutrition.

[98]  J. Taylor,et al.  Colonizing images and diagnostic labels: oppressive mechanisms for African American women's health. , 1999, ANS. Advances in nursing science.

[99]  J. Torner,et al.  Why are African Americans under-represented in medical research studies? Impediments to participation. , 1997, Ethnicity & health.

[100]  S. Manson,et al.  Research in American Indian and Alaska Native communities: navigating the cultural universe of values and process. , 1996, Journal of consulting and clinical psychology.

[101]  Elizabeth A. Klonoff,et al.  The Schedule of Racist Events: A Measure of Racial Discrimination and a Study of Its Negative Physical and Mental Health Consequences , 1996 .

[102]  G. Swanson,et al.  Recruiting minorities into clinical trials: toward a participant-friendly system. , 1995, Journal of the National Cancer Institute.

[103]  N. L. Roberson.  Clinical trial participation: Viewpoints from racial/ethnic groups , 1994, Cancer.

[104]  A. Dula,et al.  African American Suspicion of the Healthcare System Is Justified: What Do We Do about It? , 1994, Cambridge Quarterly of Healthcare Ethics.

[105]  S. Davis,et al.  Participants in prospective, randomized clinical trials for resected non‐small cell lung cancer have improved survival compared with nonparticipants in such trials , 1985, Cancer.

[106]  J. Tetzlaff,et al.  Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement , 2014 .

[107]  Kenneth P. Wells,et al.  CliniCal Care : report from the field Using a Community partnered participatory research approach to implement a randomized Controlled trial : planning Community partners in Care , 2010 .

[108]  L. Larkey,et al.  Latina recruitment for cancer prevention education via Community Based Participatory Research strategies. , 2009, Contemporary clinical trials.

[109]  E. Mayer-Davis,et al.  A collaborative approach to the recruitment and retention of minority patients with diabetes in rural community health centers. , 2009, Contemporary clinical trials.

[110]  S. Sherman,et al.  Decisions to participate in fragile X and other genomics-related research: Native American and African American voices. , 2009, Journal of cultural diversity.

[111]  P. Cronin,et al.  Undertaking a literature review: a step-by-step approach. , 2008, British journal of nursing.

[112]  R. Branson,et al.  African Americans' participation in clinical research: importance, barriers, and solutions. , 2007, American journal of surgery.

[113]  E. Tull,et al.  Internalized racism is associated with elevated fasting glucose in a sample of adult women but not men in Zimbabwe. , 2007, Ethnicity & disease.

[114]  Loretta Jones,et al.  Ethics of clinical research within a community-academic partnered participatory framework. , 2006, Ethnicity & disease.

[115]  J. L. Calderón,et al.  Improving Hawaiian and Filipino involvement in clinical research opportunities: qualitative findings from Hawai'i. , 2005, Ethnicity & disease.

[116]  A. Yancey,et al.  Understanding the challenges in recruiting blacks to a longitudinal cohort study: the Adventist health study. , 2004, Ethnicity & disease.

[117]  E. Mayer-Davis,et al.  Successful recruitment and retention strategies for a randomized weight management trial for people with diabetes living in rural, medically underserved counties of South Carolina: the POWER study. , 2004, Journal of the American Dietetic Association.

[118]  M. Andrew,et al.  A community-driven model of research participation: the Jackson Heart Study Participant Recruitment and Retention Study. , 2003, Ethnicity & disease.

[119]  Du Cy.  Racial bias in health care, still economy-based. [Review of: Byrd, WB and Clayton, LA. An American health dilemma: a medical history of African-Americans and the problem of race, beginnings to 1900. New York: Routledge, 2000]. , 2002 .

[120]  M. Fouad,et al.  Statewide Tuskegee Alliance for clinical trials. A community coalition to enhance minority participation in medical research. , 2001, Cancer.

[121]  M. Fouad,et al.  Statewide Tuskegee Alliance for clinical trials , 2001 .

[122]  D. Satcher.  Mental Health: Culture, Race, and Ethnicity—A Supplement to Mental Health: A Report of the Surgeon General , 2001 .

[123]  G. Corbie-Smith,et al.  The continuing legacy of the Tuskegee Syphilis Study: considerations for clinical investigation. , 1999, The American journal of the medical sciences.

[124]  J. Taylor,et al.  Factors affecting alcohol consumption in black women. Part I. , 1990, The International journal of the addictions.