Patients' Choices for Return of Exome Sequencing Results to Relatives in the Event of Their Death

J Law Med Ethics. 2015 Fall;43(3):476-85. doi: 10.1111/jlme.12290.


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.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Colorectal Neoplasms / genetics
  • Death*
  • Disclosure / ethics
  • Disclosure / legislation & jurisprudence*
  • Disclosure / statistics & numerical data
  • Exome / genetics*
  • Female
  • Genomics*
  • Humans
  • Informed Consent*
  • Male
  • Middle Aged
  • Patient Preference / legislation & jurisprudence*
  • Patient Preference / statistics & numerical data
  • Sequence Analysis*
  • Young Adult