Practices and Attitudes toward Returning Genomic Research Results to Low-Resource Research Participants.

ABSTRACT:

Introduction

Many research programs are challenged to accommodate low-resource research participants' (LRRP) ancillary care needs when returning genomic research results. We define LRRP as those who are low income, uninsured, underinsured, or facing barriers to act upon the results returned. This study evaluates current policies and practices surrounding return of results (RoR) to LRRP, as well as the attitudes of investigators toward providing ancillary care to LRRP.

Methods

A semi-structured interview study was conducted with representatives of 35 genomic research programs nationwide. Eligible programs were returning, or planning to return, medically actionable genomic results to participants.

Results

Three content categories emerged from this study, including: (1)

SUBMITTER: Raymond MB 

PROVIDER: S-EPMC8592386 | biostudies-literature | 2021

REPOSITORIES: biostudies-literature