Patients' Choices for Return of Exome Sequencing Results to Relatives in the Event of Their Death.
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ABSTRACT:
SUBMITTER: Amendola LM
PROVIDER: S-EPMC4617192 | biostudies-literature | 2015
REPOSITORIES: biostudies-literature
Publications
Patients' Choices for Return of Exome Sequencing Results to Relatives in the Event of Their Death.
Amendola Laura M LM Horike-Pyne Martha M Trinidad Susan B SB Fullerton Stephanie M SM Evans Barbara J BJ Burke Wylie W Jarvik Gail P GP
The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 20150101 3
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. ...[more]
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