Ethical and legal dilemmas arising during predictive testing for adult-onset disease: the experience of Huntington disease

Am J Hum Genet. 1990 Jul;47(1):4-12.

Abstract

The goal of predictive testing is to modify the risk for currently healthy individuals to develop a genetic disease in the future. Such testing using polymorphic DNA markers has had major application in Huntington disease. The Canadian Collaborative Study of Predictive Testing for Huntington Disease has been guided by major principles of medical ethics, including autonomy, beneficence, confidentiality, and justice. Numerous ethical and legal dilemmas have arisen in this program, challenging these principles and occasionally casting them into conflict. The present report describes these dilemmas and offers our approach to resolving them. These issues will have relevance to predictive-testing programs for other adult-onset disorders.

Publication types

  • Case Reports
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Abortion, Eugenic
  • Adult
  • Age Factors
  • Beneficence
  • Ethics, Medical*
  • Female
  • Genetic Markers
  • Humans
  • Huntington Disease / diagnosis*
  • Huntington Disease / genetics
  • Information Dissemination
  • Male
  • Pedigree
  • Personal Autonomy
  • Polymorphism, Restriction Fragment Length
  • Predictive Value of Tests
  • Pregnancy
  • Risk Assessment

Substances

  • Genetic Markers