Table 1 Studies Included in the Review
First Author, Publication Year Location Participation Incentive Population of Interest Participation Barriers Participation Facilitators
Alford, 2010
Henry Ford Health System Location
Yes
All populations
Lack of health literacy Participation incentives/free testing
Amiri, 2014
Henry Ford Health System
Yes
Mixed minority
Researcher mistrust/historical abuses in research No commitment/time Privacy/confidentiality concerns Impersonal feelings Altruism
Braunstein, 2008
Outpatient cardiology and general medicine clinics
No
All populations
Researcher mistrust/historical abuses in research Harm/no benefit/negative experience Health promotion/disease prevention
Buseh, 2012
Community
No
AA-only
Harm/no benefit/negative experience Researcher mistrust/historical abuses in research Misuse of genomic data Psychosocial factors/risk perceptions Cultural/religious beliefs Health promotion/disease prevention Autonomy/self-empowerment Acquire/increase health literacy
Bussey-Jones, 2010
North Carolina Colorectal Cancer Study
Yes
All populations
Privacy/confidentiality concerns Researcher mistrust/historical abuses in research Discomfort/pain Not interested in participating Previously participated in a research study
Byrd, 2011
Public locations (churches, health education conferences, caregiver conferences, co-ed senior homes, barber/beauty shops)
No
AA-only
Researcher mistrust/historical abuses in research No commitment/time Fear of health status/medical diagnosis Not interested in participating Compensation/participation incentive Was diagnosed with disease being studied Family impact Altruism
Cottler, 2013
Public locations (barbershops, beauty shops, parks, shelters, bus stops, community agencies, churches, neighborhood associations, health care facilities, sports venues, grocery stores, laundromats, nail salons, fitness centers, colleges, gas stations, check cashing venues, and health fairs)
Yes
Mixed minority
Fear of health status/medical diagnosis Health promotion/disease prevention Comfortable/adequate research setting Foster trust with researcher/research community Access to health/medical records No financial barriers/cost burdens
Diaz, 2008
Historically Black Colleges and Universities
No
AA-only
Privacy/confidentiality Researcher mistrust/historical abuses in research Not interested in participating Researchers ethnically resemble the community (namely, minority communities)
Edwards, 2008
Physician referral and participant initiation
No
AA-only
Family impact Research stigmatization Psychosocial factors/risk perceptions Fear of health status/medical diagnosis Privacy/confidentiality concerns Health insurance discrimination Family impact Promote disease surveillance behaviors (e.g., performing self-examination of breasts, increase mammogram appointments with healthcare provider, increase sense of personal control over knowledge about disease genetic variant susceptibility) Health promotion/disease prevention Acquire/increase health literacy
Fagbemiro, 2014
Nigerian residents living in the Federal Capital Territory
No
AA-only
Family impact Fear of health status/medical diagnosis Cultural/religious beliefs Harm/no benefit/negative experience Health promotion/disease prevention Predict future risk of a complex disease Genetic testing is relevant Promote lifestyle change Family impact Help formulate new health insurance plans by policymakers
Gill, 2013
South Asian and Black African-Caribbean communities
No
Mixed minority
Lack of health literacy Language translation challenges Harm/no benefit/negative experience Researcher mistrust/historical abuses in research Psychosocial factors/risk perceptions Feeling too old in age to participate Availability of language translators Promote diversity in research Comfortable/adequate research setting Foster trust with researcher/research community Acquire/increase health literacy Compensation/participation incentives Health promotion/disease prevention Family impact
Glenn, 2012
Community-based organizations and facilities (wellness centers, oncology centers, breast cancer support centers)
No
Mixed minority
Misuse of genomic data Researcher mistrust/historical abuses in research Lack of health literacy No commitment/time Financial barriers/cost burdens Family impact Health insurance discrimination Change in lifestyle Acquire/increase health literacy Access to genetic counseling Health promotion/disease prevention Help make informed health decisions Altruism
Goldenberg, 2010
Academic medical center and biobanks
No
All populations
Misuse of genomic data Research stigmatization Altruism Family impact Health promotion/disease prevention
Gordon, 2018
Transplantation center
Yes
AA-only
Fear of health status/medical diagnosis Psychosocial factors/risk perceptions Harm/no benefit/negative experience Health insurance discrimination Financial barriers/cost burdens Research stigmatization Altruism Health promotion/disease prevention
Henderson, 2008
North Carolina Colorectal Cancer Study
Yes
Mixed-minority
Misuse of genomic data Researcher mistrust/historical abuses in research Psychosocial factors/risk perceptions Fear of health status/medical diagnosis Privacy/confidentiality concerns Employment discrimination Health promotion/disease prevention Return of genomic results Acquire/increase health literacy Family impact
Hurtado-de-Mendoza, 2016
Community-based settings and hospitals
Yes
AA-only
Psychosocial factors/risk perceptions Lack of knowledge about study Researcher mistrust/historical abuses in research Autonomy/self-empowerment Health promotion/disease prevention
Jenkins, 2009
Community
Yes
All populations
Discomfort/pain No commitment/time Psychosocial factors/risk perceptions Researcher mistrust/historical abuses in research Misuse of genomic data Privacy/confidentiality concerns Altruism Compensation/participation incentive Would participate if self-collected biospecimen available Least invasive as possible (comfortable/painless)
Johnson, 2009
Churches
No
Mixed-minority
Researcher mistrust/historical abuses in research Lack of knowledge about study Harm/no benefit/negative experience Not interested in participating Privacy/confidentiality concerns Cultural/religious beliefs Research stigmatization Psychosocial factors/risk perceptions Altruism Health promotion/disease prevention Promote diversity in research Foster trust with researcher/research community Understands the aims of the study Researchers ethnically resemble the community (namely, minority communities) Compensation/participation incentives
Jones, 2017
Community
No
AA-only
No commitment/time Fear of health status/medical diagnosis Psychosocial factors/risk perceptions Harm/no benefit/negative experience Misuse of genomic data Researcher mistrust/historical abuses in research Altruism Compensation/participation incentives Promote diversity in research Return of genomic results
Kapiriri, 2017
AA adult HIV positive mothers
Yes
AA-only
Cultural/religious beliefs Fear of health status/medical diagnosis Psychosocial factors/risk perceptions Receive a part of future profits gained from research Acquire/increase health literacy Health promotion/disease prevention
Kennedy, 2011
East Baton Rouge Parish, Southern University and A&M College, community
Yes
AA-only
Not interested in participating Altruism Protection of civil rights/felt protected by legal system Biospecimens would not be misused Health promotion/disease prevention Would enable breast feeding despite being diagnosed with HIV
Lang, 2013
Nonclinical setting
No
AA-only
No commitment/time Researcher mistrust/historical abuses in research Fear of health status/medical diagnosis Not interested in participating Feeling too old in age to participate Access to genetic counseling Acquire/increase health literacy
Lemke, 2010
Outpatient clinics and hospitals
Yes
Mixed-minority
Privacy/confidentiality concerns Researcher mistrust/historical research abuses Misuse of genomic data Health insurance discrimination Employment discrimination Harm/no benefit/negative experience Lack of health literacy Fear of health status/medical diagnosis Discomfort/pain Compensation/participation incentive Altruism Health promotion/disease prevention Family impact
McDonald, 2012
University of Pennsylvania Hospital System
Yes
AA-only
Cultural/religious beliefs Temporal orientation Harm/no benefit/negative experience Altruism Family impact Health promotion/disease prevention Return of genomic results
McDonald, 2012
Self-referrals and public locations
Yes
AA-only
Researcher mistrust/historical abuses in research Misuse of genomic data Lack of knowledge about study Harm/no benefit/negative experience Research stigmatization No commitment/time Patients who usually received healthcare at a community health clinic or public facility were more likely to participate
McDonald, 2014
Residential exchanges nationwide
Yes
AA-only
Researcher mistrust/historical abuses in research Psychosocial factors/risk perceptions Privacy/confidentiality concerns Misuse of genomic data Harm/no benefit/negative experience Fear of health status/medical diagnosis No commitment/time No transportation to study site No return of genomic results Psychosocial factors Altruism Acquire/increase health literacy Understands the aims of the study Knowing who has access to genomic data Knowing how genomic data will be used pre/post research study Compensation/participation incentive
Mezuk, 2008
National Institute of Mental Health Epidemiologic Catchment Area
Yes
All populations
Psychosocial factors Altruism Health promotion/disease prevention Knowing how genomic data will be used Acquire/increase health literacy Researchers ethnically resemble the community (namely, minority communities) Family impact Compensation/participation incentive Promote diversity in research Would participate if biospecimen collected were administered via cheek swab or saliva sample versus blood draws
Pettey, 2015
Faith-based urban clinic
No
AA-only
Privacy/confidentiality concerns Lack of knowledge about study Discomfort/pain Misuse of genomic data Researcher mistrust/historical abuses in research Harm/no benefit No return of genomic results Genomic testing would help healthcare providers manage healthcare Compensation/participation incentives Health promotion/disease prevention Promote lifestyle change
Ramirez, 2015
National Cancer Institute (NCI) Special Populations Networks (SPN) for Cancer Awareness, Research, and Training program and the NCI Cancer Genetics Network partnered with Susan G. Komen for the Cure
NR
Mixed-minority
Psychosocial factors/risk perceptions Family impact Privacy/confidentiality concerns Researcher mistrust/historical abuses in research Financial barriers/cost burdens Harm/no benefit Health insurance discrimination Altruism Genomic testing would help healthcare providers manage healthcare Health promotion/disease prevention
Rodgers, 2018
Community
Yes
AA-only
Lack of health literacy Researcher mistrust/historical abuses in research Misuse of genomic data Not interested in participating Health promotion/disease prevention Learn about genetic testing Learn about children’s risk to disease genetic variants Family impact Help make informed health decisions
Sanderson, 2013
Inner city hospital outpatient clinic
No
All populations
Researcher mistrust/historical abuses in research Not interested in participating Harm/no benefit No commitment/time Fear of health status/medical diagnosis Family impact Health promotion/disease prevention Acquire/increase health literacy
Scarinci, 2013
Public health clinic and community
No
AA-only
Psychosocial factors/risk perceptions Financial barriers/cost burdens No transportation to study site Altruism Family impact Health promotion/disease prevention Acquire/increase health literacy
Spruill, 2009
National Black Nurses Association
No
AA-only
Research stigmatization Would participate if self-collected biospecimen available
Still, 2014
Public locations (churches, beauty shops, community centers)
Yes
AA-only
Misuse of genomic data Researcher mistrust/historical abuses in research Family impact Acquire/increase health literacy Health promotion/disease prevention
Streicher, 2011
Mount Sinai Biobank at Mount Sinai Medical Center
Yes
Mixed-minority
Fear of health status/medical diagnosis Psychosocial factors/risk perceptions Family impact Would participate if biospecimen collected were administered via cheek swab or saliva sample versus blood draws Health promotion/disease prevention Altruism
Sussner, 2009
Existing longitudinal study
No
AA-only
Privacy/confidentiality concerns Health insurance discrimination Fear of health status/medical diagnosis Psychosocial factors/risk perceptions Research stigmatization Family impact Altruism Family impact Acquire/increase health literacy Autonomy/self-empowerment Return of genomic results Return of ancestral results
Walker, 2014
Jackson Heart Study
Yes
AA-only
Change in lifestyle Fear of health status/medical diagnosis No commitment/time Researcher mistrust/historical abuses in research Acquire/increase health literacy
Yu, 2013
Pediatric clinics, community organizations, electronic flyers on Seattle area parent electronic lists
Yes
All populations
Researcher mistrust/historical abuses in research Psychosocial factors/risk perceptions Fear of health status/medical diagnosis No return of genomic results Health promotion/disease prevention Altruism Family impact Knowledge of health status/medical diagnosis Acquire/increase health literacy Understanding health disparities in minority populations