title: Patients' Choices for Return of Exome Sequencing Results to Relatives in the Event of Their Death.
abstract: The informed consent process for genetic testing does not commonly address preferences regarding disclosure of results in the event of the patient's death. Adults being tested for familial colorectal cancer were asked whether they want their exome sequencing results disclosed to another person in the event of their death prior to receiving the results. Of 78 participants, 92% designated an individual and 8% declined to. Further research will help refine practices for informed consent.
authors.affiliation: Clinical and research genetic counselor in the University of Washington, Division of Medical Genetics. Ms. Amendola received her M.S. in Genetic Counseling in Houston, Texas at the University of Texas, Graduate School of Biomedical Sciences.
authors.forename: Laura M
authors.initials: LM
authors.lastname: Amendola
authors.affiliation: Research Coordinator in the Division of Medical Genetics at the University of Washington, Seattle. She received her M.P.H. at the University of Massachusetts, Amherst, and is a scientist board member for two Institutional Review Boards (IRBs) in Seattle.
authors.forename: Martha
authors.initials: M
authors.lastname: Horike-Pyne
authors.affiliation: Research scientist in the Department of Bioethics and Humanities at the University of Washington. She holds a master's degree from the Interdisciplinary Program in Health and Humanities at Michigan State University.
authors.forename: Susan B
authors.initials: SB
authors.lastname: Trinidad
authors.affiliation: Associate Professor of Bioethics and Humanities at the University of Washington and Adjunct Associate Professor of Epidemiology and Genome Sciences. She completed a Ph.D. in Human Population Genetics at the University of Oxford, U.K., and a postdoctoral fellowship in the Ethical, Legal, and Social Implications (ELSI) of genetic research at the Pennsylvania State University.
authors.forename: Stephanie M
authors.initials: SM
authors.lastname: Fullerton
authors.affiliation: Professor of Law and holds the George Butler Research professorship at University of Houston Law Center, where she is the Director of the Center for Biotechnology & Law. She earned her Ph.D. at Stanford University and J.D. at Yale Law School.
authors.forename: Barbara J
authors.initials: BJ
authors.lastname: Evans
authors.affiliation: Professor of Bioethics and Humanities at the University of Washington and Adjunct Professor of Medicine (Medical Genetics). She completed a Ph.D. in Genetics and an M.D. at the University of Washington where she also trained in Internal Medicine.
authors.forename: Wylie
authors.initials: W
authors.lastname: Burke
authors.affiliation: Head of the Division of Medical Genetics and holds the Arno G. Motulsky Chair of Medicine at the University of Washington, Seattle, where she is a Professor of Medicine (Medical Genetics) and Genome Sciences. She received her Ph.D. in Human Genetics at the University of Michigan and her M.D. at the University of Iowa in the Medical Scientists Training Program. She completed her residency in Internal Medicine at the Hospital of the University of Pennsylvania and her fellowship in Medical Genetics at the University of Washington.
authors.forename: Gail P
authors.initials: GP
authors.lastname: Jarvik
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D015179:Colorectal Neoplasms / Q000235:genetics; D003643:Death; D030881:Disclosure / Q000941:ethics / Q000331:legislation & jurisprudence* / Q000706:statistics & numerical data; D059472:Exome / Q000235:genetics*; D005260:Female; D023281:Genomics; D006801:Humans; D007258:Informed Consent; D008297:Male; D008875:Middle Aged; D057240:Patient Preference / Q000331:legislation & jurisprudence* / Q000706:statistics & numerical data; D017421:Sequence Analysis; D055815:Young Adult