Supporting undiagnosed participants when clinical genomics studies end. Nat Genet 2022 Aug;54(8):1063-1065
Date
07/29/2022Pubmed ID
35902745Pubmed Central ID
PMC9421423DOI
10.1038/s41588-022-01150-8Scopus ID
2-s2.0-85135230620 (requires institutional sign-in at Scopus site) 7 CitationsAbstract
Many large research initiatives have cumulatively enrolled thousands of patients with a range of complex medical issues but no clear genetic etiology. However, it is unclear how researchers, institutions, and funders should manage the data and relationships with those participants who remain undiagnosed when these studies end. In this comment, we outline the current literature relevant to post-study obligations in clinical genomics research and discuss the application of current guidelines to research with undiagnosed participants.
Author List
Halley MC, Ashley EA, Tabor HKAuthor
Meghan C. Halley PhD, BA, MPH Assistant Professor in the Institute for Health and Humanity department at Medical College of WisconsinMESH terms used to index this publication - Major topics in bold
GenomicsHumans
Prevalence
Research
Risk Factors
