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Ethnic identity and engagement with genome sequencing research.

ABSTRACT: PURPOSE:We examined the role of ethnic identity (which measures the degree to which individuals identify with their ethnic group) in beliefs about, and intentions to learn, genomic results. METHODS:A longitudinal cohort was recruited to implement genome sequencing among healthy participants self-identifying as African, African American, or Afro-Caribbean, 40-65 years old (n?=?408). Before receiving genomic results, participants completed a survey assessing social and behavioral constructs related to health, genomics, and ethnic identity. RESULTS:Ethnic identity was positively correlated with perceived value of genomic results and expected benefits from genomic research participation. Among participants with stronger ethnic identity, cognitive beliefs (perceived value of results [b?=?0.63, 95% confidence interval: 0.29, 0.98, p?

SUBMITTER: Turbitt E

PROVIDER: S-EPMC6586548 | biostudies-literature | 2019 Aug

REPOSITORIES: biostudies-literature

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Ethnic identity and engagement with genome sequencing research.

Turbitt Erin E Roberts Megan C MC Hollister Brittany M BM Lewis Katie L KL Biesecker Leslie G LG Klein William M P WMP

Genetics in medicine : official journal of the American College of Medical Genetics 20181220 8

<h4>Purpose</h4>We examined the role of ethnic identity (which measures the degree to which individuals identify with their ethnic group) in beliefs about, and intentions to learn, genomic results.<h4>Methods</h4>A longitudinal cohort was recruited to implement genome sequencing among healthy participants self-identifying as African, African American, or Afro-Caribbean, 40-65 years old (n = 408). Before receiving genomic results, participants completed a survey assessing social and behavioral co ...[more]

PMID: 30568309

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Project description:BackgroundPatient engagement in research is a dominant discourse in clinical research settings as it is seen as a move toward sustainable and equitable health care systems. In Canada, a key driver is the Strategy for Patient-Oriented Research of the Canadian Institutes of Health Research, which asserts that meaningful patient engagement can only be fostered when stakeholders understand its value. This study assessed researchers' perceptions of the meaning and value of patient engagement in research within a Canadian cardiovascular research network. In doing so, the secondary aim was to inform the development of a structured patient engagement initiative by identifying potential challenges and related mitigation strategies.MethodsWe employed a multi-method strategy involving electronic surveys and semi-structured telephone interviews with network research scientists across Canada. Interview data were analyzed using thematic and content analysis. Survey data were analyzed using descriptive statistics.ResultsThirty-eight electronic surveys (response rate =33%) and 16 interviews were completed with network members. Some participants were uncertain about the meaning and value of patient engagement. While voicing guarded support, four challenges relating to patient engagement were identified from the interviews: 1) identification of representative and appropriate patients, 2) uncertainty about the scope of patients' roles given concerns about knowledge discrepancies, 3) a perceived lack of evidence of the impact of patient engagement, and 4) the need for education and culture change as a prerequisite for patient engagement. Research scientists were largely concerned that patients untrained in science and tasked with conveying an authentic patient experience and being a conduit for the voices of others might unsettle a traditional model of conducting research.ConclusionConcerns about patient involvement in research were related to a lack of clarity about the meaning, process, and impact of involvement. This study highlights the need for education on the meaning of patient engagement, evidence of its impact, and guidance on practical aspects of implementation within this research community.

Dataset Information

Ethnic identity and engagement with genome sequencing research.

Publications

Ethnic identity and engagement with genome sequencing research.

Similar Datasets

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