Engaging populations underrepresented in research through novel approaches to consent

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‐majori...

Full description

Saved in:
Bibliographic Details
Published in:American journal of medical genetics. Part C, Seminars in medical genetics Seminars in medical genetics, 2018-03, Vol.178 (1), p.75-80
Main Authors: Kraft, Stephanie A., Doerr, Megan
Format: Article
Language:English
Subjects:
Cancer
Case studies
Consortia
diversity
genetic and genomic research
Genetic Research
Genetics
Genetics, Medical - methods
Genomics
Humans
Informed Consent
Minority Groups
National Human Genome Research Institute (U.S.)
Populations
Precision Medicine
recruitment and retention
Research ethics
United States
Citations: Items that this one cites
Items that cite this one
Online Access:Get full text
Tags: Add Tag
No Tags, Be the first to tag this record!
Description
Summary: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.
ISSN:1552-4868
1552-4876
DOI:10.1002/ajmg.c.31600