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 |