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Am J Med Genet C Semin Med Genet. 2018 Mar;178(1):75-80. doi: 10.1002/ajmg.c.31600. Epub 2018 Mar 7.

Engaging populations underrepresented in research through novel approaches to consent.

Author information

1
Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, Seattle, Washington.
2
Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington.
3
Sage Bionetworks, Seattle, Washington.

Abstract

The lack of diversity of populations included in genomics databases is an important inhibitor of genomic discovery from bench to bedside. One way to increase the diversity of participants is to ensure that informed consent processes are designed for cultural and linguistic concordance for non-majority populations. This article describes two case studies of genomics research studies that are using novel approaches to informed consent to increase recruitment and retention of participants from traditionally underrepresented populations: The Cancer Health Assessments Reaching Many (CHARM) study, part of the Clinical Sequencing Evidence-Generating Research (CSER) consortium, and the All of Us Research Program, part of the Precision Medicine Initiative. We conclude by proposing a community of practice among researchers seeking to improve informed consent to increase diversity in genomics research.

KEYWORDS:

diversity; genetic and genomic research; informed consent; recruitment and retention; research ethics

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