The role of race and ethnicity in views toward and participation in genetic studies and precision medicine research in the United States: A systematic review of qualitative and quantitative studies

Elena R. Fisher, Rebekah Pratt, Riley Esch, Megan Kocher, Katie Wilson, Whiwon Lee, Heather A. Zierhut

Research output: Contribution to journalArticlepeer-review

18 Scopus citations

Abstract

Background: Racial/ethnic minority populations in the United States are consistently underrepresented in genetic research. Large-scale public participation is required to ensure discoveries from precision medicine research are applicable to everyone. To evaluate views toward and facilitators of participation among minority populations in the United States, we conducted a systematic review of literature. Methods: Six databases were searched for articles published from 2005 to 2018 assessing minority populations’ views and/or willingness to participate in genetic research. A thematic framework was applied to extracted data to synthesize findings, and the Socio-Ecological Model was used to evaluate papers. Results: Review of 2,229 titles and abstracts identified 27 papers (n = 8 qualitative, n = 19 quantitative). Themes included knowledge of genetics, engagement in research, facilitators and barriers to participation, and cultural considerations. Understanding of genetics was low, yet the majority of participants were willing to participate in genetic research among all populations included in the literature (range: 57%–97%). Recommendations for research included utilizing community-based participatory approaches, evaluating participants’ informational needs, incentivizing participation, and providing direct benefits (e.g., genetic test results). Conclusion: Results could influence future study designs that incorporate all levels of the Socio-Ecological Model and better meet the needs of underrepresented groups, thereby ensuring precision medicine research findings are applicable to all.

Original languageEnglish (US)
Article numbere1099
JournalMolecular Genetics and Genomic Medicine
Volume8
Issue number2
DOIs
StatePublished - Feb 1 2020

Bibliographical note

Funding Information:
Study Design and study goals Population THEME 1: Knowledge and understanding of genetics THEME 2: Engagement and participation in research THEME 3: Practical considerations that facilitate participation THEME 4: Concerns and barriers to participation THEME 5: Cultural‐ and community‐specific considerations Subtheme A: Motivations Subtheme B: Willingness Subtheme C: Predictors Aagaard‐Tillery (2006) Design: Quantitative; in‐person questionnaire Goals: To assess whether reproductive‐aged women enrolling in a genetic study would demonstrate a bias in their willingness to participate in a repository for future genetic research African Americans ( n  = 1,727), Hispanics ( n  = 1,594), Whites ( n  = 1,576), Asian Americans ( n  = 40), Native Americans ( n  = 10), “other” ( n  = 55) – – 73% of women consented for unrestricted use of their samples in future genetic studies Hispanic women had lowest rates of consent for future use of their sample (68%; OR = 0.4)* compared with White women (76%) African Americans were less likely to agree to subsequent use of their samples as well (OR = 0.6)* African Americans and Hispanics were most likely to prefer to discard samples after initial study (20% and 28%, respectively)** 7% of women requested that investigators first ask permission for use of their sample in future genetics studies (not unrestricted access) – – Akinleye ( ) Design: Quantitative; telephone and in‐person surveys; randomization into two study arms Goals: To examine differences between African Americans and Whites in knowledge, attitudes, and motivations regarding genetic susceptibility testing for Alzheimer's disease Whites ( n  = 249), African Americans ( n  = 64) Knowledge of Alzheimer's disease and genetic testing was lower in African Americans than Whites** White participants estimated a higher personal risk of Alzheimer's disease than African Americans and were more concerned about developing the disease than African Americans* Reasons for seeking genetic testing included seeking information about treatments or prevention, contributing to research, and arranging personal affairs and long‐term care (equally endorsed by both Whites and African Americans) – African Americans more frequently endorsed confirming feelings of already developing Alzheimer's disease as a reason to test* White participants were more likely to endorse concerns about test results affecting insurance as a reason not to test* African Americans were more likely to endorse lack of cure or prevention for Alzheimer's disease as a reason not to test* – A small proportion (26%) of all participants endorsed reasons not to pursue testing, which included concerns about results affecting insurance and lack of a cure or prevention for Alzheimer's disease – Almeling ( ) Design: Quantitative; cross‐sectional online survey Goals: To examine public opinion on policy issues in genetics, including federal spending on genetic research, the perceived significance of genetic nondiscrimination laws, and clinicians’ involvement in direct‐to‐consumer genetic testing Whites ( n  = 1,584), African Americans ( n  = 206), Hispanics ( n  = 172), “other” ( n  = 138) – – Less than 1% of all participants had purchased a direct‐to‐consumer testing kit before the study 57% of participants favored more federal spending on genetic research; Whites were less likely than Latinos, African Americans, and “other race” to favor more federal funding for genetic research (55% vs. 64%, 63%, 59%, respectively)* Most participants view genetic nondiscrimination laws as important (82%); Latinos were less likely to view genetic nondiscrimination laws as important compared to Whites (80% vs. 83%**, respectively) Majority of respondents (65%) thought clinicians should be involved in explaining direct‐to‐consumer test results – – Bloss et al. ( ) Design: Quantitative; cross‐sectional online survey Goals: To analyze the demographics of a sample of blood bank donors to inform on whether recruitment of blood bank donors for precision medicine research would produce participants representative of the United States. Whites ( n  = 85,952), Asian Americans and/or Pacific Islanders ( n  = 9,234), African Americans ( n  = 4,973), Native Americans ( n  = 561), “other” ( n  = 9,407) Precision medicine literacy (familiarity with precision medicine terms) for all participants was an average of 50% (mean = 12 ( SD  = 6) on a 0 to 24 scale) – – Hispanics**, Asian Americans or Pacific Islanders*, African Americans**, and “other race”** were less likely than Whites to respond to a survey about a hypothetic precision medicine research study (4% all groups vs. 7% Whites) Asian Americans and Pacific Islanders were the only ethnic group who were significantly less likely to indicate interest in participating in the hypothetical precision medicine research study* Factors that predicted interest in study participation included more positive beliefs about the value of research, higher levels of precision medicine literacy, placing less importance on controlling one's personal information, and willingness to share more types of personal health data** Factors that predicted lack of interest in study participation included concerns about data privacy, control, and ownership, desire for control over personal information, and less favorable views about the value of genetic research** – – – Buseh et al. ( ) Design: Quantitative; cross‐sectional exploratory survey design Goals: To examine the knowledge of medical genetics, group‐based medical mistrust, and future expectations of genetic research and the influence of these measures on perceived disadvantages of genetic testing among Black African immigrants and/or refugees Black African immigrants and refugees ( n  = 212) Knowledge of medical genetics, including knowledge of inheritance, risks, and genetic testing implications, was generally low (65% average, SD  = 17%) The majority of participants saw genetic testing as essential for diagnosis and treatment of disease Anticipated future uses of genetic testing included determining risk for many diseases (79%), identifying more diseases before birth (74%), and paying attention to genetics aspects of disease for treatment (71%) – Higher genetics knowledge levels were associated with fewer perceived disadvantages of genetic testing** Higher group‐based medical mistrust and greater anticipated negative impacts of testing were associated with greater perceived disadvantages of genetic testing** – Perceived disadvantages of genetic testing included insurance discrimination (71%), employment discrimination (39%), lack of government protection (26%), and emotional and interpersonal consequences (25%) 33% of participants expressed concerns about being viewed negatively by others if their family carried a faulty gene Group‐based medical mistrust of healthcare providers and systems was prevalent; more than 50% of participants indicated that people of their ethnic group do not receive the same care as other ethnic groups Concerns about societal discrimination were cited by 33% of participants as a reason not to test Buseh et al. ( ) Design: Qualitative; in‐person focus group interviews Goals: To explore perspectives on genomics research and DNA biobanking among Black African immigrant community leaders and to discern how to best invite and sustain engagement of Black African immigrants in research endeavors. Black African immigrant community leaders ( n  = 27) – Reasons to be involved in genetics research included hope for positive impact on future generations and being empowered by information obtained from research – – Conditions a research study should meet before participants would consider engaging included assurance of privacy and transparency regarding how genetic info would be used Participants cited preference for individual informed consent for every research project that desired to use banked DNA from participants; desired ability to withhold permission for use Concerns about insurance and employment discrimination Concerns about confidentiality and researchers using genetic info for other research purposes that were not consented for Barrier to participation included disapproval of research for profit and patenting of findings Cultural beliefs of the body remaining whole and intact upon death as a barrier to participation Personal health information should be kept private in African culture Genetics can be at odds with traditional understanding about illness Trusting a research project if an African community member is placed in a leadership position on the research team Desired culturally relevant education about purpose of research before consenting Fear of genetics being used to oppress or socially discriminate groups Facilitator of research participation included ensuring benefits are distributed back to community Cox (2007) Design: Quantitative; in‐person survey Goals: To evaluate demographic and psychosocial factors associated with consent for genetic testing among a large sample of African Americans entered in a smoking cessation clinical trial African Americans ( n  = 745) – – 83% of participants consented to blood collection for future genetic testing and storage in biobank for at least 10 years 88% of participants gave permission to be contacted for future studies ( Null ) No demographic differences were found between those that gave consent and those that declined – – – Culhane‐Pera et al. ( ) Design: Quantitative; in‐person survey Goals: To assess the feasibility of conducting genomic and pharmaco‐genomic‐based research for genetic variants that are relevant to the Hmong community using a community‐based participatory research process Hmong individuals ( n  = 237) – – 85% of participants agreed to store their DNA (obtained from saliva sample) for future analyses about any topics 82% of participants agreed to share DNA with other researchers about similar topics (pharmaco‐genomics and conditions that affect the Hmong community) 78% of participants agreed to be contacted for future research – – Reasons for not participating included concerns about not benefitting from the study if not receiving individual results back – Dye et al. ( ) Design: Quantitative; cross‐sectional online survey Goals: To assess attitudes toward genetic testing and genetic research and to compare attitudes by racial group between African Americans and Whites Whites ( n  = 403), African Americans ( n  = 56) – – The majority of both White and African American participants had never had genetic testing (93% vs. 88%, respectively) African Americans were less likely to want to participate in research that would use their DNA, create cell lines from their DNA for future studies, or share their DNA with a private company** African Americans were less likely to agree that the use of genetic testing should be promoted and should be available to those who want to use it compared with White participants** African Americans were less likely than Whites to want to know results from testing even if their healthcare provider already knew results or if it was easy/cheap for their provider to order the testing* – – – Frazier et al. ( ) Design: Qualitative; semi‐structured focus group interviews Goals: To describe and compare the attitudes, knowledge, and beliefs of older adults from three ethnic groups about genetic testing and genetic research and to determine how these attitudes influence informed consent and decision‐making about participation in genetic research African Americans ( n  = 9), Hispanics ( n  = 8), Whites ( n  = 6) All groups included the concepts of inheritance and susceptibility to disease when defining genetics Confusion regarding the meaning of genetic testing was prevalent in all groups Sources of information about genetics included the Internet, consumer reports, television, and material distributed by the NIH and AARP Reasons for testing included physician recommendation to test, disease prevention, and value for future generations African American participants did not agree that everyone values participation in genetic testing for the sole purpose of research Participants from all groups agreed that families should be informed of genetic testing results to direct health promotion and disease prevention – – African American participants would be interested in testing only when the information obtained would be provided back to individual participants All groups suggested that providers should avoid medical jargon and technical terminology when consenting, and to establish alertness and orientation in potential participants Participants thought providers should emphasize the voluntary nature of consent for hospitalized older adults who might not perceive consent as voluntary Barriers to testing included not wanting information about personal genetic susceptibility, concerns for disrupting family relationships, and concerns about insurance and employer discrimination Some participants lacked confidence in the interpretation and validity of genetic test results Culturally relevant beliefs were incorporated in participants’ understanding of genetics, such as relating genetics to a curse or sickness caused by someone's ill‐wishing Participants were apprehensive that passing along information from genetic testing to family would cause illness or shame Freedman et al. ( ) Design: Quantitative; exploratory design; in‐person; and telephone surveys Goals: To examine the views of African Americans and European Americans at risk for end‐stage kidney disease on the value and use of genetic testing in research. Whites ( n  = 66), African Americans ( n  = 64) – Reasons for wanting to know results from genetic testing included knowing health information about themselves, using results to improve health and plan ahead, and having the right to know information about themselves The majority of participants would want to know results of genetic testing even if no treatment was available ( Null ) There were no significant differences between African American and White participants in their desire to know results from testing – Participants cited worries that information could hurt them and not being able to improve their health as reasons not to test or know results from testing – Halbert et al. ( ) Design: Quantitative; cross‐sectional structured telephone interviews Goals: To describe intentions to participate in smoking and genetics research and to determine factors that are associated with participation intentions among African American smokers African Americans ( n  = 128) – Most participants (60%) believed there are benefits to people who participate in medical research; benefits included improving quality of health care and being empowered to change smoking behavior Majority of participants (58%) reported they would be willing to participate in research to identify genetic risk factors for smoking Participants who perceived greater benefits to participating in research were most likely to be willing to participate (OR = 3.2)** Participants who reported fewer concerns about the limitations and risks of research were more likely to be willing to participate (OR = 0.90)** – Limitations and risks endorsed by participants included not knowing how results would be used, concerns about the result not being accurate, and feeling no control over behavior 42% of respondents believed that participants in research are taken advantage of or exploited; however, this was not significantly associated with a decreased willingness to participate in research Fear of being labeled or treated differently by family members or by a physician was cited as a risk of testing Halbert et al. ( ) Design: Quantitative; cross‐sectional telephone survey Goals: To assess the willingness of African Americans to participate in a clinical study for precision medicine and to identify variables that have a significant independent association with participation. African Americans ( n  = 510) – Positive expectations about participating in cancer genetics research included helping future generations (86%), contributing to strategies to prevent and treat cancer (84%), helping people who have an increased risk for cancer (77%), and getting information about how to detect and treat cancer for themselves (42%) 31% of participants reported being willing to participate in a government‐sponsored study that involved providing a cheek swab which could be shared with other researchers and that the participants would not receive any results from Respondents with higher distrust in researchers were less likely to participate* Beliefs about positive expectations for research, concerns about privacy, distrust in researchers, and negative expectations about impact of research did not have significant associations with likelihood of participation Facilitators included being given free healthcare services and the study assessing a health condition the individual was worried about 45% of respondents reported more participation facilitators than barriers, 9% had an equal number of barriers and facilitators, and 46% reported more participation barriers Negative expectations about participating in researched included researchers using results for profit (34%), loss of privacy (40%), obtaining information they did not want to know (43%), and loss of legal rights if something bad happened after enrolling in study (27%) Barriers to participating in research included not knowing who could obtain their personal information (60%) and the results not being made available to each participant (59%) 57% of participants had a negative expectation that participating in research could lead to results being used to develop cancer drugs that someone like them could not afford Barrier to participation included difficultly getting to where the study was being conducted (63%) Participants were more likely to report willingness to participate if someone from their racial group was conducting the study Hensley Alford et al. ( ) Design: Quantitative; prospective observational study (online and in‐person survey and consent process) Goals: To evaluate whether gender, race, and education status influences interest and participation in a multiplex genetic susceptibility test using a population‐based sample of healthy adults African Americans ( n  = 3,740), Whites ( n  = 2,608) – – Overall rates of participation in testing were 30% among African Americans and 55% among White participants** African Americans were less likely to complete the baseline invitation survey about personalized genomics research (first step in study) compared with Whites (33% vs. 36%; OR = 0.88)* African Americans were less likely to visit the Web site for more information (second step) than Whites (26% vs. 40%; OR = 0.52)** African Americans were significantly less likely to be tested than Whites (OR = 0.35)**; race was the only factor significantly associated with participation in genetic testing – – – Hooper et al. (2013) Design: Quantitative; cross‐sectional in‐person survey Goals: To examine aspects of study design that are important to individuals at risk for Alzheimer's disease in determining whether they would be willing to undergo genetic testing, learn the results, and participate in the study. Hispanics ( n  = 26), Whites ( n  = 8) 10 of 26 Hispanic participants were living in Mexico – Reasons to participate in genetic testing and a research trial included wanting to help future generations, benefits outweighing the risks, wanting to know for future planning 65% of participants reported they may be or would definitely be interested in learning their genetic status for familial Alzheimer's disease 62% of respondents reported interest in participating in a clinical trial; 26% reported they may be interested in participating – – Concerns about a research trial's risks not outweighing the benefits were cited as a primary reason not to participate in genetic testing and research The number of participants interested in undergoing genetic testing for a research study decreased as the potential risks and complications of the study increased English‐speaking participants more frequently endorsed a willingness to participate in research trials with higher risks compared with Spanish‐speaking participants Hull et al. ( ) Design: Mixed‐methods telephone interviews (quantitative and qualitative data) Goals: To examine patients’ attitudes and preferences regarding use of anonymous and identifiable clinical samples for genetic research Whites (76%), African Americans (16%), Asian Americans (2%), Native Americans (2%), “other” (4%) Reported separately: Hispanic (5%), Not Hispanic (95%) N  = 1,193 total 90% of participants had heard at least something about genetic research; 27% had heard “a lot” about genetic research 90% of participants reported feeling somewhat or very positive toward genetic research Reasons for wanting to be notified about research being done included curiosity, knowing they were making a contribution, and patients’ rights to know Most respondents indicated they would grant permission for their blood samples to be used in research if asked, whether samples were donated anonymously (86%) or were identifiable (84%) Participants who were more private (OR = 0.69)* and less trusting in researchers (OR = 0.57)* were more likely to want to know about research being done with their sample in both scenarios (anonymous vs. identifiable) African American respondents (OR = 1.91)* were more likely to want their permission to be sought in the anonymous scenario, as well as those who were less religious (OR = 0.52)*, more private (OR = 0.84)*, and less trusting of researchers (OR = 0.40)* Majority of participants felt that it was moderately or very important for them to be informed about research that would be done with their sample, regardless of whether the sample was donated anonymously (72%) or was identifiable (81%) 57% of participants would require their permission to be sought before samples could be used in other research while the remainder would be satisfied with only notification of research being done Some respondents desired to receive results or benefit directly from the research being done with their donated sample Participants wanted upfront reassurance that their confidentiality would be protected by researchers Concerns about the research topic and concerns about confidentiality and privacy drove participants’ desire to know about research being done with their donated sample Most participants trusted medical researchers somewhat (56%) or completely (30%) Jazwinski et al. (2013) Design: Quantitative; post hoc analysis of a larger study Goals: To characterize groups of patients who accepted or declined pharmaco‐genomic testing as part of a larger treatment study on hepatitis C Whites ( n  = 2,096), African Americans ( n  = 547), Hispanics ( n  = 211), Asian Americans ( n  = 51), “other” ( n  = 44) – – Consent rates for participation in research did not differ according to ethnicity, with similar rates found in Whites (58%), African Americans (54%), and Hispanic participants (57%); consent rates were nonsignificantly lower among Asian American participants (41%) ( Null ) Patients who agreed to participate had similar demographic factors, medical comorbidities, and treatment outcomes compared with those who did not provide consent – – – Jenkins et al. ( ) Design: Qualitative; in‐person focus group interviews Goals: To understand motivations and barriers to participation in studies that use DNA collection. African Americans ( n  = 32), Whites ( n  = 5), “other” ( n  = 1) – Reasons for participation in the study included being interested in learning more and helping others Participants felt positive overall about the appearance of the specimen collection kit that was mailed to their homes – African American participants reported a shorter time frame from receiving the specimen collection kit to providing a specimen Participants reported positive views of monetary incentives and felt the incentives increased legitimacy of study, but were not a primary decision‐making factor for participation Respondents noted that reminder telephone calls had positive effects on their participation Participants suggested researchers develop materials targeting fathers or including advice for mothers on how to encourage the father to participate Responses were mixed regarding whether inclusion of a short video or Web site with additional information would facilitate sample collection Participants were concerned about lack of information on the consent form regarding when their samples would be destroyed and how long they would be stored, as well as no information on return of individual results Participants in all groups cited challenges of convincing their child's father to participate in research and stated this was the biggest barrier to participation in specimen donation Participants reported concerns about the safety and sterility of the collection kit, as well as difficulty with the methods of sample collection for themselves and their child Participants who did not return a specimen stated that they preferred to receive individual results African American participants reported their child's father expressing concern about how their biologic samples would be used by the government Participants expressed personal concerns about the government using their biologic material Kinney et al. ( ) Design: Quantitative and qualitative methods Goals: To examine predictors of BRCA1 testing decisions, as well as barriers and facilitators to participation, in male and female members of an African American kindred with a BRCA1 mutation African Americans ( n  = 161) – Motivating factors to participate in genetic testing research included family and personal motivations (62%), educational or informational motivations (28%), and the perspective that participation could have a positive and broad community impact 54% of participants chose to participate in pretest education and counseling; 83% of those participants accepted testing results and 17% declined receiving the results Factors that predicted testing acceptance included increased perceived risk of being a mutation carrier (OR = 4.1)*, older age (OR = 6.9)*, and higher levels of cancer genetics knowledge (OR = 1.5)* ( Null ) No associations were observed between test uptake and baseline psychological distress, fatalistic beliefs about cancer, participation in prior genetic research, social support, or religious coping style – Reasons for declining to participate included lack of interest (54%), personal problems (6%), and negative test results in other relatives (4%) 53% of participants thought their regular healthcare provider did not have adequate knowledge to provide genetics services and lacked education and training 18% of participants indicated that they would not have been tested had it not been accessible and available through this study; they also reported that higher out‐of‐pocket testing costs reduced interest in testing Negative experiences with prior participation in genetic research were cited as a reason not to participate by 10% of respondents Time constraints (12%) and study logistics (8%) were cited as reason for declining to participate Reasons for not getting clinical genetic testing prior to the study included lack of access to information, lack of knowledge about the test, and lack of knowledge about where to go for genetic counseling and testing Lakes et al. ( ) Design: Qualitative; in‐person focus group interviews Goals: To study maternal preferences for the return of their child's genetic results and to describe the experiences, perceptions, attitudes, and values that are considered when individuals from different racial and cultural backgrounds consider participating in genetic research Whites (49%), Asian Americans (21%), Pacific Islanders (6%), Iranians (4%), African American and White (2%), Native American/Alaskan and White (2%), no response or “other” (17%) Reported separately: Hispanic (28%), not Hispanic (72%) N  = 50 total – A commonly cited benefit of participating in genetic research and receiving results was to obtain results that were relevant to a known genetic risk in the family Mothers differentiated between receiving results for themselves and results for their babies; they were more likely to request results for themselves – – Preferences and expectations about return of results depended on context of the disease, whether treatments were available, personal characteristics such as anxiety or desire for control, timing of results disclosure, and relation to family history of disease Latina participants saw return of individual results as a significant incentive to participate in a genetic study, and noted that having a family history of a disorder might increase participation Participants desired an interpersonal, dynamic, flexible process that accommodated individual preferences and contextual differences for returning results When results were returned that were perceived as negative, Latina participants expected researchers to facilitate an intervention (not just make a referral) Latina mothers wanted more information about whether personal actions could help prevent a particular disease before deciding to receive genetic results for a child Some participants wanted to know about all possible studies that would be done with their baby's sample and the security measures in place to avoid misuse of samples Perceived barriers to participation included potential emotional harms of receiving results, anticipated negative effects on the parent–child relationship or quality of life, and not receiving individual results for some participants Latinas indicated that receiving genetic results during pregnancy could be traumatic if the individual belongs to a culture where terminating a pregnancy is not considered an option Murphy and Thompson ( ) Design: Qualitative; in‐person focus group interviews Goals: To explore Black participants’ attitudes toward and willingness to participate in genetic studies of psychiatric disorders African Americans ( n  = 18), Whites ( n  = 8) Most participants described their interpretation of genetics as traits that are passed down (39%), and many had a superficial knowledge of genetics terminology (36%) Participants’ understanding of genetic research included experimental procedures (28%) and the purpose as trying to understand the origins of disease (22%) Participants acknowledged their incomplete understanding of genetic research (25%) and felt that research is inaccurately represented in the media Beliefs about causes of psychiatric disorders included environmental causes and stressful life events (27%), family and childhood upbringing (19%), lifestyle‐related personal habits (13%), and substance abuse Perceived advantages and benefits of genetic research included understanding the origins of disease (48%), preventing or curing disease with targeted treatment (35%), keeping society better informed, and destigmatizing certain disorders through removal of personal blame Reasons to participate included the desire to contribute to society and fellow humans, and having a personal or family history of the disorder being investigated All of the participants indicated a willingness to participate in other ongoing research studies ‐ Facilitators to participation included receiving direct benefits, such as treatment, education, assessment, or other form of research‐related intervention; monetary compensation was mentioned in all groups Desirability of following up with participants (e.g., following up about results) as a way of making their participation more meaningful Participants also favored hospitable accommodations at research sites (food, activities while waiting) The preferred method of being alerted about ongoing research studies was through word of mouth Concerns about potentially harmful or unpleasant study procedures and unwanted adverse effects were barriers to participation Participants cited a fear of the unknown as a barrier to participation for some people Concerns about confidentiality and privacy regarding family history of psychiatric disorders were also prevalent 25% of participants felt that minority communities are uneducated about genetics Participants noted general feelings of stigmatization surrounding psychiatric disorders, and concerns about inability to involve family in research due to stigmatization of mental illness in Black community Some participants doubted that information garnered from research findings would be beneficial to Black people in all cases Perceived drawbacks to participating also included past negative experiences affecting current willingness and worries about unethical experimentation One participant cited race‐based distrust in medical research as a reason not to participate Lack of awareness about ongoing genetic research studies was cited as a reason most participants had never participated previously Nodora et al. ( ) Design: Quantitative; in‐person survey, randomized into two study arms Goals: To assess Hispanic individuals’ willingness to donate biospecimens for research and determine whether the type of healthcare provider approaching the participants impacts rates of consent Hispanic women ( n  = 140) Approximately 85% of all participants had limited health literacy; however, this was not a barrier to consent for participation – Consent for biospecimen donation for research was 97% among participants consented by a physician and 93% among participants consented by a research assistant (nonsignificant difference) ( Null ) Demographic variables of participants did not vary between the two consenter groups (physician vs. research assistant) – – – Pettey et al. ( ) Design: Qualitative; in‐person semi‐structured individual interviews Goals: To examine the feasibility of developing pedigrees and to explore perceptions of family history and genetic research among African Americans with hypertension African Americans ( n  = 29) Participants’ knowledge of family history of disease included good and bad behaviors associated with disease, problems due to disease, and barriers to obtaining health care 90% of participants were able to report sufficient detail about their family history of disease to generate a pedigree Reasons to participate in research included wanting to help others, finding a cure for hypertension, learning more, and finding the right medicine for the right person Participants said their strong family history of disease motivated them to take better care of their health, but this family history had no influence on current actions 83% of participants stated they would participate in a future genetic study and would be willing to provide a DNA sample – Participants were agreeable to participating but wanted more information and desired assurance of privacy before participating One participant stated they would only participate if the results would be given back to individuals after the study Concerns about participating included concerns about the test being painful and not being sure that a genetic study of hypertension would be helpful Concerns about privacy included wanting the sample to only be used for the particular study consented for Culture influenced family teaching about disease and included home remedies Participants mentioned needing to schedule testing around their job as a logistical consideration of participation Rew et al. ( ) Design: Qualitative; semi‐structured individual interviews Goals: To determine levels of knowledge and approaches to decision‐making regarding genetics and genetic testing in adolescents and their parents Whites ( n  = 16), Hispanics ( n  = 8), Asian Americans ( n  = 5), African Americans ( n  = 4) Most participants in all groups had heard of genetic testing, but younger adolescents did not have accurate knowledge; parents’ knowledge was somewhat more complete and older adolescents were most knowledgeable The majority of older adolescents had accurate knowledge of the Human Genome Project; younger adolescents and parents’ knowledge was very limited Primacy sources of information about genetics included the Internet and doctors; almost half of younger adolescents would use their parents as a source of information when making decisions about testing Participants thought genetic testing would be useful to learn about future diseases in order to take actions to prevent or prepare for them – Parents and older adolescents expressed greater concern about the credibility of testing (validity, reliability, accuracy, and specificity of the test) than younger adolescents Factors to consider when making the decision to participate in testing included how testing is done, credibility of testing, purpose of testing, outcomes of testing, history of testing, cost of testing, and meaning of test Participants’ opinions varied on the appropriate age to test, but was an average of about 18 years Some participants (mostly older adolescents) mentioned concerns about potential negative impacts of testing – Sanderson et al. ( ) Design: Quantitative; randomized three‐arm mailed survey design Goals: To assess willingness to participate in a biobank using different consent and data sharing models and to examine perceived benefits, concerns, and information needs regarding participation in biobank research Whites (51%), Asian Americans (17%), African Americans (12%), Native American or Alaska Natives (5%), Native Hawaiian or Pacific Islanders (1%), “other” (10%), more than one race (3%) Reported separately: Hispanic (18%), not Hispanic (82%) N  = 13,000 total – Perceived benefits of participating included helping future generations (84%), leading to better medical treatments (83%), helping doctors take better care of patients (78%), helping their family (65%), helping themselves personally (44%) 66% of participants would be willing to participate in the biobank described to them Black or African American participants expressed the lowest willingness to participate in the biobank (56%; OR = 0.58)* compared with White participants (70%) Participants were more willing to participate in the biobank if they perceived more benefits (OR = 8.1)*, had fewer concerns about participating (OR = 0.32)*, had fewer information needs (OR = 1.62)*, and were less religious (OR = 0.68)* Respondents were less willing to participate if they had lower levels of trust in medical researchers and the healthcare system, higher levels of worry about their privacy, and stronger feelings about the importance of keeping health information private* Willingness to participate was slightly but significantly higher in a controlled data sharing model (68%) compared with an open data sharing model (65%)* Information needs included wanting to know if a researcher misused health information in the biobank (86%), what kind of knowledge would result from sample use (84%), who makes sure that health info is used in the right way (84%), if health info could be used by insurance companies (79%), the types of research that would be done (74%), who runs the biobank (73%), how the biobank covers cost (60%), if health info would be used by drug companies to make money (59%) Perceived concerns about participating included worrying about privacy (51%), worry about sharing of medical record (45%), worry about how researchers would use health info (41%), worry about genetic info being shared (38%), worry about research being done they did not want a part in (37%), and worry that someone would make money using their health info (36%) 90% of participants agreed health information privacy was important to them; 64% agreed that they worried about the privacy of their health information 64% agreed that they trusted their healthcare system, and 61% agreed that they trusted medical researchers Sheppard et al. ( ) Design: Quantitative; telephone survey and mailed specimen kit Goals: To understand sociocultural, health care, and clinical factors that impact women's participation in genetic research in Black and White breast cancer survivors Whites ( n  = 391), African Americans ( n  = 155), Asian Americans and “other subgroups” ( n  = 23) – The most common reason for providing consent was altruism and wanting to help further research 70% of participants returned saliva kits for biobanking for research ( Null ) Provision of specimens did not vary according to race of the participants Women with earlier stage breast cancer* and those with higher functional well‐being* were more likely to provide specimens for research Participants who were more satisfied with their provider**, reported higher ratings of patient–provider communication*, and had higher satisfaction with the time providers spent with them** were more likely to provide biospecimens for research Participants reporting greater access to health care were more likely to provide biospecimens** Women with lower ratings of religiosity were more willing to provide a specimen for research** ( Null ) Perceived healthcare discrimination, medical mistrust, and healthcare literacy did not differ between participants who provided biospecimens and those who did not – – – Simon et al. ( ) Design: Qualitative; semi‐structured focus group interviews Goals: To describe attitudes toward, and barriers and facilitators of, participation in biospecimen research among Chinese older women Chinese women ( n  = 47) – Benefits of biospecimen research identified by participants included improving research developments for drugs and disease, enabling early diagnosis and treatment, and benefitting future generations and others Participants held predominantly positive attitudes toward biospecimen research overall – – Facilitator to participation involved allowing alternate specimen types including donation of hair or nail biospecimen instead of requiring blood Compensation and receiving reports or other health service benefits were facilitators to participation Trust building was important when considering whether to participate; it was suggested that word of mouth would leverage this trust in the community Participants suggested increasing education to promote awareness of biospecimen research Perceived barriers to participation included negative effects of testing on physical health, concerns about privacy, opinions that research may not be useful to them personally due to research timelines, and lack of reporting back to individual participants about results Various impediments related to old age were cited, including perspectives that older adults are not useful or are too poor of health to be used in research Participants identified benefits of biospecimen research specific to the Chinese community, noting there were differences between Chinese and Whites; they thought that research would benefit aging minority groups such as Chinese Perspective of keeping the body whole (blood donation violating this belief) as a barrier to participation Barrier to participation involved being worried about privacy and maintaining a good reputation in the community which could be lost if harmful info is found

Funding Information:
Dr. Heather Zierhut's work, although unrelated to this manuscript, has been funded by the National Society of Genetic Counselors. Dr. Zierhut received compensation as a member of the advisory board of GeneMatters, LLC, and owns stock in the company. Riley Esch's work is under the advisement of Dr. Eric A. Hendrickson at the University of Minnesota, who receives funding from the National Institutes of Health, though unrelated to this manuscript. Elena Fisher, Dr. Rebekah Pratt, Megan Kocher, Katie Wilson, and Whiwon Lee declare no potential conflicts of interest. The authors wish to thank Bonnie S. LeRoy, M.S., L.G.C., for her contributions to the review of this manuscript.

Keywords

  • genetic research
  • precision medicine research
  • racial/ethnic minorities
  • research participation strategies

PubMed: MeSH publication types

  • Journal Article
  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't
  • Systematic Review

Fingerprint

Dive into the research topics of 'The role of race and ethnicity in views toward and participation in genetic studies and precision medicine research in the United States: A systematic review of qualitative and quantitative studies'. Together they form a unique fingerprint.

Cite this