The duty to warn at-risk relatives-The experience of genetic counselors and medical geneticists

Am J Med Genet A. 2020 Feb;182(2):314-321. doi: 10.1002/ajmg.a.61425. Epub 2019 Dec 8.

Abstract

Studies published over 15 years ago surveyed genetic counselors (GC) and medical geneticists (MG) to examine their clinical experiences with the conflict of "duty to warn" versus patient confidentiality. Federal and state laws pertaining to medical professionals' duty to warn have since been implemented following the publications of these studies. Using a merged version of surveys employed in the prior studies, this study seeks to understand clinicians' current decision-making process when faced with patient refusal to inform at-risk relatives, as well as their familiarity with and opinions of laws and guidelines covering this issue. Consistent with the previous studies, the majority of MG and almost half of GC experience patient refusal. Significantly, fewer MG and GC believe they had a duty to warn their patients' relatives of genetic risk. Only 8% of participants believe current guidelines effectively address the issue of duty to warn. Participant awareness of federal or state laws regulating the disclosure of genetic information remains low. The conflict of duty to warn remains a shared experience among genetics professionals, and resources are needed to facilitate informed decision-making. Participants' opinions of current policies and clinical decisions may guide professional actions regarding duty to warn.

Keywords: clinical genetics; confidentiality; duty to warn; genetic counseling; privacy.

MeSH terms

  • Confidentiality / psychology
  • Disclosure
  • Duty to Warn / ethics*
  • Family / psychology
  • Genetic Counseling / ethics
  • Genetic Counseling / psychology*
  • Genetic Predisposition to Disease*
  • Genetic Testing / standards
  • Genetics, Medical / ethics
  • Guidelines as Topic
  • Humans
  • Physicians / psychology*
  • Risk Factors