title: Genomic inheritances: disclosing individual research results from whole-exome sequencing to deceased participants' relatives.
abstract: Whole-genome analysis and whole-exome analysis generate many more clinically actionable findings than traditional targeted genetic analysis. These findings may be relevant to research participants themselves as well as for members of their families. Though researchers performing genomic analyses are likely to find medically significant genetic variations for nearly every research participant, what they will find for any given participant is unpredictable. The ubiquity and diversity of these findings complicate questions about disclosing individual genetic test results. We outline an approach for disclosing a select range of genetic results to the relatives of research participants who have died, developed in response to relatives' requests during a pilot study of large-scale medical genetic sequencing. We also argue that studies that disclose individual research results to participants should, at a minimum, passively disclose individual results to deceased participants' relatives.
authors.affiliation: Lawrence University, Appleton, WI 54911, USA. benchan@alum.swarthmore.edu
authors.forename: Ben
authors.initials: B
authors.lastname: Chan
authors.forename: Flavia M
authors.initials: FM
authors.lastname: Facio
authors.forename: Haley
authors.initials: H
authors.lastname: Eidem
authors.forename: Sara Chandros
authors.initials: SC
authors.lastname: Hull
authors.forename: Leslie G
authors.initials: LG
authors.lastname: Biesecker
authors.forename: Benjamin E
authors.initials: BE
authors.lastname: Berkman
mesh_terms: D020022:Genetic Predisposition to Disease; D005820:Genetic Testing; D014644:Genetic Variation; D023281:Genomics; D006801:Humans; D008297:Male; D008875:Middle Aged; D010865:Pilot Projects; D035842:Research Subjects; D017422:Sequence Analysis, DNA; D014342:Truth Disclosure / Q000941:ethics*