Exploring the motivations of research participants who chose not to learn medically actionable secondary genetic findings about themselves.

Will SchupmannSkye A MinerHaley K SullivanJamie R GloverJanet E HallShepherd H SchurmanBenjamin E Berkman

Published in: Genetics in medicine : official journal of the American College of Medical Genetics (2021)

This study demonstrates the need for a more robust informed consent process when soliciting research participants' preferences about receiving SFs. We also suggest that our data support implementing a default practice of returning SFs without actively soliciting preferences.

Keyphrases

primary care
healthcare
quality improvement
decision making
functional connectivity
gene expression
machine learning
data analysis