Engagement and return of results preferences among a primarily African American genomic sequencing research cohort

Lewis, Katie; Turbitt, Erin; Chan, Priscilla; Epps, Sandra; Biesecker, Barbara B.; Erby, Lori H.; Fasaye, Grace Ann; Biesecker, Leslie G.

doi:10.1016/j.ajhg.2021.04.002

Cited by 13 publications

(10 citation statements)

References 42 publications

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“…[9][10][11][12] This work also suggests that the RoR in some form may motivate participation among traditionally underrepresented populations. 16,18 Our study situates these findings in a comparative global context. We found that in 16 of the 21 countries studied, respondents were substantially less likely to be motivated to donate DNA or health data than those in the United States by the RoR and more likely to be not influenced at all.…”

Section: Discussionsupporting

confidence: 73%

“…8 Influential voices in this debate have been those of members of the public, patients, and research participants, which have featured prominently alongside that of bioethicists and researchers-both directly and through a series of studies that suggest that RoR is valued and even expected by participants and particularly by patients. [9][10][11][12][13][14][15][16] The 2018 National Academies report on RoR, eg, draws on this work to argue that participants want and expect personal feedback on research results. 1 Furthermore, it has been suggested that not only do potential research participants value or expect findings, but also the possibility of receiving feedback may motivate participation in genomics research and biobanks.…”

Section: Introductionmentioning

confidence: 99%

“…9,10,17 Feedback of results to motivate participation has also been raised as a means of addressing the lack of diversity in data sets and reach populations who are currently under-represented. 16,18 However, this discourse has mostly involved researchers, policy makers, and public audiences from the United States, and thus, it cannot be assumed that it will naturally translate to global contexts outside the United States. 19 The differences in policy and normative positions on RoR around the world reflects differing cultural views about participant needs, different national health care systems, and the constraints of research sector resources in different contexts.…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries

Milne¹,

Morley²,

Almarri³

et al. 2022

Genetics in Medicine

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The aim of this study was to determine how attitudes toward the return of genomic research results vary internationally. Methods: We analyzed the "Your DNA, Your Say" online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle-, and high-income countries, and these were gathered in 15 languages. We analyzed how participants responded when asked whether return of results (RoR) would motivate their decision to donate DNA or health data. We examined variation across the study countries and compared the responses of participants from other countries with those from the United States, which has been the subject of the majority of research on return of genomic results to date. Results: There was substantial variation in the extent to which respondents reported being influenced by RoR. However, only respondents from Russia were more influenced than those from the United States, and respondents from 20 countries had lower odds of being partially or wholly influenced than those from the United States. Conclusion: There is substantial international variation in the extent to which the RoR may motivate people's intent to donate DNA or health data. The United States may not be a clear indicator of global attitudes. Participants' preferences for return of genomic results globally should be considered.

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Section: Discussionsupporting

confidence: 73%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries

Milne¹,

Morley²,

Almarri³

et al. 2022

Genetics in Medicine

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“…Investigators should invite and empower communities to become partners in the research process, to collaboratively shape the research to reap its benefits, identify barriers, offer accommodations to make participation feasible, actively contribute to the work themselves, and form long-term relationships for future research. [25][26][27][28][29] Fundamentally, addressing representation involves showing communities, through words and actions, that their interests are inherently valuable and consistently addressed as part of a relationship that extends beyond the bounds of recruitment for an individual research study.…”

Section: The Representation Problemmentioning

confidence: 99%

Addressing underrepresentation in genomics research through community engagement

Lemke¹,

Esplin²,

Goldenberg³

et al. 2022

The American Journal of Human Genetics

Self Cite

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“…Hudson & Collins, 2015;Jarvik et al, 2014;Lewis et al, 2019;Lewis et al, 2021;Murphy Bollinger et al, 2014;Murphy et al, 2008; …”

mentioning

confidence: 99%

Attitudes and beliefs regardingrace‐targetedgenetic testing of Black people: A systematic review

Iltis

Rolf

Yaeger

et al. 2023

Journal of Genetic Counseling

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Geographical ancestry has been associated with an increased risk of various genetic conditions. Race and ethnicity often have been used as proxies for geographical ancestry. Despite numerous problems associated with the crude reliance on race and ethnicity as proxies for geographical ancestry, some genetic testing in the clinical, research, and employment settings has been and continues to be race-or ethnicitybased. Race-based or race-targeted genetic testing refers to genetic testing offered only or primarily to people of particular racial or ethnic groups because of presumed differences among groups. One current example is APOL1 testing of Black kidney donors. Race-based genetic testing raises numerous ethical and policy questions. Given the ongoing reliance on the Black race in genetic testing, it is important to understand the views of people who identify as Black or are identified as Black (including African American, Afro-Caribbean, and Hispanic Black) regarding race-based genetic testing that targets Black people because of their race. We conducted a systematic review of studies and reports of stakeholder-engaged projects that examined how people who identify as or are identified as Black perceive genetic testing that specifically presumes genetic differences exist among racial groups or uses race as a surrogate for ancestral genetic variation and targets Black people. Our review identified 14 studies that explicitly studied this question and another 13 that implicitly or tacitly studied this matter. We found four main factors that contribute to a positive attitude toward race-targeted genetic testing (facilitators) and eight main factors that are associated with concerns regarding race-targeted genetic testing (barriers). This review fills an important gap. These findings should inform future genetic research and the policies and practices developed in clinical, research, public health, or other settings regarding genetic testing.

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Engagement and return of results preferences among a primarily African American genomic sequencing research cohort

Cited by 13 publications

References 42 publications

Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries

Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries

Addressing underrepresentation in genomics research through community engagement

Attitudes and beliefs regardingrace‐targetedgenetic testing of Black people: A systematic review

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