Approaches to carrier testing and results disclosure in translational genomics research: The clinical sequencing exploratory research consortium experience.
Kathryn M PorterTia L KauffmanBarbara A KoenigKatie L LewisHeidi L RehmCarolyn Sue RichardsNatasha T StrandeHolly K TaborSusan M WolfYaping YangLaura M AmendolaDanielle R AzzaritiJonathan S BergKatie BergstromLeslie G BieseckerSawona BiswasKevin M BowlingWendy K ChungEllen W ClaytonLaura K ConlinGregory M CooperMatthew C DulikLevi A GarrawayArezou A GhazaniRobert C GreenSusan M HiattSeema M JamalGail P JarvikKatrina A B GoddardBenjamin S Wilfondnull nullPublished in: Molecular genetics & genomic medicine (2018)
Future translational genomics research projects will need to make decisions regarding whether and how to disclose carrier results. The CSER consortium experience identifies approaches that balance potential participant interest while limiting impact on project resources.