Sociocultural variation in attitudes toward use of genetic information and participation in genetic research by race in the United States: implications for precision medicine

Dye, Timothy D.; Li, Dongmei; Demment, Margaret; Groth, Susan W.; Fernández, Diana Crespo; Dozier, Ann; Chang, Jack

doi:10.1093/jamia/ocv214

Cited by 31 publications

(17 citation statements)

References 50 publications

(36 reference statements)

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“…Additional limitations of our study involve our respondent characteristics and small sample size. We did not obtain information on respondents’ race or ethnicity, which may influence attitudes toward genetic testing [ 40 ]. Respondents in our study were relatively well-educated and had higher socio-economic status than the United States general population [ 41 , 42 ].…”

Section: Discussionmentioning

confidence: 99%

Patient preferences for massively parallel sequencing genetic testing of colorectal cancer risk: a discrete choice experiment

et al. 2018

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This study enumerated patients’ preference-based personal utility and willingness-to-pay for massively parallel sequencing (MPS) genetic testing of colorectal cancer (CRC) risk. Our setting was the New Exome Technology in (NEXT) Medicine Study, a randomized control trial of usual care genetic testing vs. exome sequencing. Using a discrete choice experiment (DCE), we elicited patient preferences for information on genetic causes of CRC. We estimated personal utility for the following four attributes: proportion of individuals with a genetic cause of CRC who receive a diagnosis, number of tests used, wait time for results, and cost. A total of 122 patients completed our DCE (66% response rate). On average, patients preferred genetic tests identifying more individuals with a diagnosis and involving a shorter wait time. Assuming MPS identifies more individuals with a Mendelian form of CRC risk, involves fewer tests, and results in a shorter wait than traditional diagnostic testing, average willingness-to-pay (WTP) for MPS ranged from US$400 (95% CI: $300, $500) to US$1541 (95% CI: $1224, $1859). These results indicate that patients value information on genetic causes of CRC and replacing traditional diagnostic testing with MPS testing will increase patients’ utility. Future research exploring the costs and benefits of MPS for CRC risk is warranted.

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Section: Discussionmentioning

confidence: 99%

Patient preferences for massively parallel sequencing genetic testing of colorectal cancer risk: a discrete choice experiment

et al. 2018

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“…Less favorable views about the value of research predicted a lower willingness to participate in research (Bloss et al, 2018). Importantly, while some studies reported a correlation between being a member of a racial/ethnic minority group (Hispanic, African American, or Asian American) and decreased willingness to participate (n = 5; Aagaard-Tillery et al, 2006;Bloss et al, 2018;Dye et al, 2016;Hensley Alford et al, 2011;Sanderson et al, 2017), other studies found that race and ethnicity were not predictors of consent for research…”

Section: Subtheme C: Predictors Of Participationmentioning

confidence: 99%

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

Fisher

Pratt

Esch

et al. 2019

Molec Gen & Gen Med

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This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made. 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 communitybased 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. K E Y W O R D Sgenetic research, precision medicine research, racial/ethnic minorities, research participation strategies

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“…Dimensions underlying genomic research (e.g. participation) are not equally accepted by all populations and understanding these elements could ensure equal benefit from precision medicine research [5]. The objective of this article is to describe the likelihood of respondents from a high and a low-middle income country to participate in genetic research and to identify commonalities across these two countries.…”

Section: Introductionmentioning

confidence: 99%

Participation in Genetic Research: Amazon's Mechanical Turk Workforce in the United States and India

Groth

Dozier²,

Demment³

et al. 2016

Public Health Genomics

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Background: Genomic research has innumerable benefits. However, if people are unwilling to participate in genomic research, application of knowledge will be limited. This study examined the likelihood of respondents from a high- and a low- to middle-income country to participate in genetic research. Methods: Cross-sectional data were collected using Amazon's Mechanical Turk workforce to ascertain attitudes toward participation in genetic research. Registered country of residence was either the US (n = 505) or India (n = 505). Multiple logistic regression models were used to assess adjusted effects of demographic characteristics, health, social status, beliefs and concerns on 4 genetic research outcomes. Results: Participants from India who believed chance and powerful others influenced their health were more likely to participate in genetic research (OR = 1.0, 95% CI 1.0-1.1) and to agree with sharing of DNA data (OR = 1.1, 95% CI 1.1-1.2). US participants were more likely to be concerned about protection of family history, which they indicated would affect participation (OR = 3.6, 95% CI 2.1-6.0). Commonalities for the likelihood of participation were beliefs that genetic research could help find new treatments (India OR = 2.3, 95% CI 1.0-5.4; US OR = 4.7, 95% CI 2.0-11.2) and descendants would benefit (India OR = 2.6, 95% CI 1.2-5.5; US OR = 3.0, 95% CI 1.3-7.1). Conclusions: Concurrence of beliefs on benefits and concerns about genetic research suggest they may be common across countries. Consideration of commonalities may be important to increase global participation in genetic research.

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Sociocultural variation in attitudes toward use of genetic information and participation in genetic research by race in the United States: implications for precision medicine

Cited by 31 publications

References 50 publications

Patient preferences for massively parallel sequencing genetic testing of colorectal cancer risk: a discrete choice experiment

Patient preferences for massively parallel sequencing genetic testing of colorectal cancer risk: a discrete choice experiment

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

Participation in Genetic Research: Amazon's Mechanical Turk Workforce in the United States and India

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