Attitudes of African Americans toward return of results from exome and whole genome sequencing.
paper
Cited
Public
- Authors
- Yu, Joon-Ho; Crouch, Julia; Jamal, Seema M; Tabor, Holly K; Bamshad, Michael J
- Year
- 2013
- Journal
- American journal of medical genetics. Part A
- PMID
- 23610051
- DOI
- 10.1002/ajmg.a.35914
- PMCID
- PMC3635144
Exome sequencing and whole genome sequencing (ES/WGS) present patients and research participants with the opportunity to benefit from a broad scope of genetic results of clinical and personal utility. Yet, this potential for benefit also risks disenfranchising populations such as African Americans (AAs) that are already underrepresented in genetic research and utilize genetic tests at lower rates than other populations. Understanding a diverse range of perspectives on consenting for ES/WGS and receiving ES/WGS results is necessary to ensure parity in genomic health care and research. We conducted a series of 13 focus groups (n = 76) to investigate if and how attitudes toward participation in ES/WGS research and return of results from ES/WGS differ between self-described AAs and non-AAs. The majority of both AAs and non-AAs were willing to participate in WGS studies and receive individual genetic results, but the fraction not interested in either was higher in AAs. This is due in part to different expectations of health benefits from ES/WGS and how results should be managed. Our results underscore the need to develop and test culturally tailored strategies for returning ES/WGS results to AAs.
Willingness to Participate and Interest in Receiving ResultsA. Participants’ willingness to participate in a WGS studyB. Participants’ interest in receiving individual genetic results
LLM interpretation
This figure consists of two bar charts analyzing participant attitudes toward whole genome sequencing (WGS). Panel A compares willingness for self and child participation between initial and final polls, showing higher willingness among non-AA participants compared to AA participants across all categories. Panel B displays interest in receiving results, indicating that non-AA participants were more likely to want "all results" and at least one specific result compared to AA participants.
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| Title | Year | PMID |
|---|---|---|
| Review: Genetic research on alcohol use outcomes in African American populations: A review of the literature, associated challenges, and implications. | 2017 | 28240821 |
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