Knowledge, motivations, expectations, and traits of an African, African-American, and Afro-Caribbean sequencing cohort and comparisons to the original ClinSeq® cohort

Lewis, Katie; Heidlebaugh, Alexis R; Epps, Sandra; Han, Paul K. J.; Fishler, Kristen; Klein, William M. P.; Miller, Ilana; Ng, David; Hepler, Charlotte; Biesecker, Barbara B.

doi:10.1038/s41436-018-0341-9

Cited by 26 publications

(37 citation statements)

References 37 publications

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“…Overall, participants’ intentions to receive actionable results were skewed; however, our sample likely has higher intentions and more positive attitudes about genome sequencing compared to the general population given they possess some of the characteristics of early adopters. 26 We expect intentions to receive actionable results are more varied among the general population, which may in fact strengthen the findings we observed here. The measures in this study have largely not been validated with African-Americans which may account for the lack of associations (e.g., expected harms and affective risk perception).…”

Section: Discussionsupporting

confidence: 84%

“…While this was outside the scope of our study, which focused on personal benefits and harms and receipt of results, qualitative data suggest some members of our cohort were motivated to enroll to counter underrepresentation from minority populations in genomics research. 26…”

Section: Discussionmentioning

confidence: 99%

“…25 In 2011, efforts began to recruit a more diverse sample, resulting in recruitment of 467 healthy participants who self-identified as African, African-American or Afro-Caribbean. 26 Participants were ages 40–64 at the time of consent, non-smokers over the past year, and lived in the Washington DC metro area.…”

Section: Methodsmentioning

confidence: 99%

“…If eligible for the study, participants gave consent and subsequently were invited to complete a baseline survey (before receiving any sequencing results) with a range of social and behavioral constructs related to genomic research. 26 Surveys were completed on-line, on paper, or verbally during the enrollment session whereby a staff member entered responses into an electronic format. The National Human Genome Research Institute IRB approved the parent study.…”

Section: Methodsmentioning

confidence: 99%

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Ethnic identity and engagement with genome sequencing research

Turbitt

Roberts

Hollister

et al. 2019

Genetics in Medicine

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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% CI: 0.29, 0.98, p <0.001) and expected benefits from genomic research participation ( b =0.32, 95% CI: 0.12, 0.53, p =0.002)] were associated with intentions to receive results. Among those with weaker ethnic identity, there was no such association. Conclusion. Individuals with stronger ethnic identity seem to attend more to cognitive beliefs such as the value of genomic results when deliberating receipt of results compared to those with weaker ethnic identity. Understanding ethnic identity variation and its influence on genome sequencing perceptions and intentions can inform future research opportunities using ethnic identity to explore specific practical, clinical questions.

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Section: Discussionsupporting

confidence: 84%

Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

See 2 more Smart Citations

Ethnic identity and engagement with genome sequencing research

Turbitt

Roberts

Hollister

et al. 2019

Genetics in Medicine

Self Cite

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“…Attitudes also vary by respondent race or ethnicity, and religious involvement. Members of racial and ethnic minority groups report generally positive attitudes toward clinical testing and are interested in contributing to knowledge relevant to their communities, but they also have greater concerns about stigma, discrimination, misuse of genetic information, and practical barriers to testing than members of other groups (Dye et al, 2016; Hamilton et al, 2016; Hann et al, 2017; Lewis et al, 2018; Peters, Rose, & Armstrong, 2004). In addition, greater religious involvement has been found to be associated with more negative attitudes toward genetic testing (Botoseneanu, Alexander, & Banaszak-Holl, 2011; Chokoshvili et al, 2017).…”

Section: Introductionmentioning

confidence: 99%

Attitudes Toward Genetics and Genetic Testing Among Participants in the Jackson and Framingham Heart Studies

Saylor

Ekunwe

Antoine‐LaVigne

et al. 2019

Journal of Empirical Research on Human Research Ethics

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Genetic analysis has become integral to many large cohort studies. However, little is known about longitudinal cohort study participants' attitudes toward genetics and genetic testing. We analyzed data from a survey of participants in the Jackson Heart Study (n = 960), Framingham Heart Study (n = 955), and Framingham Heart Study-Omni Cohort (n = 160). Based on a three-question attitude scale, most participants had positive attitudes toward genetic testing (median score = 4.3-5/5). Participants were also asked to select words to describe their attitudes toward genetics. More respondents endorsed the positive words "hopeful" (60%-70%), "optimistic" (44%-64%), "enthusiastic" (35%-43%), or "excited" (28%-30%) than the negative words "cautious" (35%-38%), "concerned" (25%-55%), "worried" (6%-13%), "pessimistic" (2%-5%), or "horrified" (1%-5%). Characteristics associated with favorable attitudes were greater genetics knowledge, higher subjective numeracy, experience with genetic testing, less frequent religious attendance, and not being employed. These findings demonstrate variation in attitudes even among participants in long-standing cohort studies, indicating a need for ongoing participant engagement and education.

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Understanding access to genomics in an ethnically diverse south Florida population: A comparison of demographics in odyssey and rapid whole genome sequencing programs

Hussain

Quittner

Brown

et al. 2020

Journal of Genetic Counseling

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Advances in genomic medicine have evolved to include rapid whole genome sequencing (rWGS) in pediatric intensive care settings. Traditionally, genetic testing was conducted in outpatient clinics, with stepwise genetic testing occurring over several years. This delayed the time to diagnosis, making it more difficult to include underrepresented groups, such as those who identify as Black and Latinx. National genetic sequencing programs have also struggled to engage these participants in their studies, leading to a significant disparity in access to new genetic technologies. The purpose of our study was to compare the demographic characteristics of families enrolled in both an Odyssey Program (N = 46), defined as outpatients in the Genetics Clinic who have had prior genetic testing, and a newly implemented rWGS (N = 52) sequencing program. Despite living in a large, ethnically diverse city, our results indicated that parents in the Odyssey program differed significantly from parents in the rWGS program in level of education, family income, and insurance status. For example, 71.5% of parents in the diagnostic Odyssey program had a college or advanced degree, whereas 42% of parents in the rWGS program had this level of education. Family income and insurance also differed, with 48.6% of families in the Odyssey program earning $100,000 or more versus 28.2% in rWGS; 56% of parents in the Odyssey program had private insurance with 26% on Medicaid whereas only 23% of parents in rWGS had private insurance, with the vast majority of children on Medicaid (69%). Thus, our Odyssey program illustrates some of the common pitfalls in implementing genomic testing in an ethnically diverse community, including lack of referrals, travel to outpatient visits, and a cultural mismatch with providers. The successful enrollment of underrepresented groups in the rWGS program demonstrates that given the opportunity to participate in genetic testing, families are interested and aware of the potential benefits of this testing for their child. As genomic sequencing transitions from outpatient to inpatient settings, an opportunity arises to close the health disparity gap. Recommendations for implementing rWGS in pediatric, intensive care settings that address the common barriers faced by underrepresented families are discussed.

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Knowledge, motivations, expectations, and traits of an African, African-American, and Afro-Caribbean sequencing cohort and comparisons to the original ClinSeq® cohort

Cited by 26 publications

References 37 publications

Ethnic identity and engagement with genome sequencing research

Ethnic identity and engagement with genome sequencing research

Attitudes Toward Genetics and Genetic Testing Among Participants in the Jackson and Framingham Heart Studies

Understanding access to genomics in an ethnically diverse south Florida population: A comparison of demographics in odyssey and rapid whole genome sequencing programs

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