Genetic Information Access, a Legal Perspective: A Duty to Know or a Right Not to Know, and a Duty or Option to Warn?


It is often argued that concern with basic personal privacy suggests that individuals should be allowed to decide in isolation whether to obtain genetic information through testing and whether to make the results available to others. However, the familial nature of genetic information complicates matters by raising question regarding whether an individual has a moral duty to discover and/or reveal existing genetic information to possibly affected family members. Alternatively, if this information would harm family members, do individuals have a duty not to obtain, or at least not to divulge, genetic test results? What role, if any, should legislation play in dealing with access to genetic information at the familial level? Do health care professionals have a responsibility or a right to inform close family members of the genetic status of a related individual? We consider the personal, familial and public health care perspectives regarding this debate.

Key Concepts

  • Many individuals face conflicting psychological effects regarding the anticipation of obtaining genetic test results.
  • Despite the potential usefulness of genetic information, the majority of individuals facing potentially devastating genetic diseases opt not to undergo testing.
  • Results of an individual's genetic tests are often of interest to family members which raises complications regarding individual privacy.
  • Controversy also surrounds the responsibility of health care professionals whether to maintain patient privacy or inform affected family members.
  • Courts and lawmakers struggle with the question whether individual privacy should be respected when genetic information may be of significant interest to family members.
  • Courts have recognized that in some circumstances, health care providers have an option to warn family members of a genetic risk, when there is a significant risk of a serious and avoidable harm.
  • A strong case can be made that, with few exceptions (e.g. PKU), genetic information should fall under the usual rules protecting individual privacy and confidentiality.
  • Future discoveries in genetic information may lead to more exceptions to the duty of confidentiality.

Keywords: genetic tests; privacy legislation; right not to know; duty to know; duty and privilege to warn


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Further Reading

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Lemmens, Trudo, Luther, Lori, and Hoy, Michael(Sep 2015) Genetic Information Access, a Legal Perspective: A Duty to Know or a Right Not to Know, and a Duty or Option to Warn?. In: eLS. John Wiley & Sons Ltd, Chichester. [doi: 10.1002/9780470015902.a0005188.pub2]