Pragmatic Tools for Sharing Genomic Research Results with the Relatives of Living and Deceased Research Participants.
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ABSTRACT:
SUBMITTER: Wolf SM
PROVIDER: S-EPMC6040667 | biostudies-literature | 2018 Mar
REPOSITORIES: biostudies-literature
Publications
Pragmatic Tools for Sharing Genomic Research Results with the Relatives of Living and Deceased Research Participants.
Wolf Susan M SM Scholtes Emily E Koenig Barbara A BA Petersen Gloria M GM Berry Susan A SA Beskow Laura M LM Daly Mary B MB Fernandez Conrad V CV Green Robert C RC LeRoy Bonnie S BS Lindor Noralane M NM O'Rourke P Pearl PP Breitkopf Carmen Radecki CR Rothstein Mark A MA Van Ness Brian B Wilfond Benjamin S BS
The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 20180327 1
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Project description:IntroductionMany 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.MethodsA 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.ResultsThree content categories emerged from this study, including: (1) RoR structures, (2) barriers to RoR to LRRP, and (3) solutions to meet community and LRRP needs. Three major structures of RoR emerged: (1) RoR Embedded in Clinical Care, (2) RoR Independent of Clinical Care, and (3) Reliance on Clinical Partnerships to Facilitate RoR. Inadequacy of program resources to address the needs of LRRP was commonly considered a significant obstacle. The attitudes and views of informants regarding responsibility to provide ancillary care for LRRP receiving genomic results were highly varied. Some informants believed that genomic sequencing and testing was not a priority for LRRP because of other pressing issues in their lives, such as housing and food insecurity. Research programs differ regarding whether clinical and social support for LRRP is considered within the purview of the research team. Some programs instituted accommodations for LRRP, including social work referral and insurance enrollment assistance.ConclusionSupport to access downstream treatment is not readily available for LRRP in many genomic research programs. Development of best practices and policies for managing RoR to LRRP is needed.
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