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

  1. Trudo Lemmens1,
  2. Lori Luther1,
  3. Michael Hoy2

Published Online: 15 JUL 2008

DOI: 10.1002/9780470015902.a0005188

eLS

eLS

How to Cite

Lemmens, T., Luther, L. and Hoy, M. 2008. Genetic Information Access, a Legal Perspective: A Duty to Know or a Right Not to Know, and a Duty or Option to Warn?. eLS. .

Author Information

  1. 1

    University of Toronto, Toronto, Canada

  2. 2

    University of Guelph, Guelph, Canada

Publication History

  1. Published Online: 15 JUL 2008

Abstract

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.

Keywords:

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