Attitudes of african americans toward r - PubMed Mobile

Attitudes of african americans toward r - PubMed Mobile

Attitudes of african americans toward return of results from exome and whole genome sequencing.

Authors

Yu JH,et al. Show all

Yu JH, Crouch J, Jamal SM, Tabor HK, Bamshad MJ.

Journal

Am J Med Genet A. 2013 May;161(5):1064-72. doi: 10.1002/ajmg.a.35914.

Affiliation

Department of Pediatrics, University of Washington, Seattle, Washington.

Abstract

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. © 2013 Wiley Periodicals, Inc.

Copyright © 2013 Wiley Periodicals, Inc.

PMID

23610051 [PubMed - in process]

PMCID

PMC3635144 [Available on 2014/5/1]

Full text: John Wiley & Sons, Inc.

Related Citations

Show all

• Practices and policies of clinical exome sequencing providers: analysis and implications.
• Practices and Policies of Clinical Exome Sequencing Providers: Analysis and Implications.
• Genomics really gets personal: how exome and whole genome sequencing challenge the ethical framework of human genetics research.
• Informed consent for whole genome sequencing: a qualitative analysis of participant expectations and perceptions of risks, benefits, and harms.
• Use of whole exome and genome sequencing in the identification of genetic causes of primary immunodeficiencies.