Citation

Abdol Hassan K. Med. Ethics J. 2007; 1(1): 81-98.

Copyright

(Copyright © 2007, Medical Ethics and Law Research Center, Shahid Beheshti University of Medical Sciences)

DOI

unavailable

PMID

unavailable

Abstract

Recent advances in genomic research have led to the development of new diagnostic tools, including tests which make it possible-to predict the future occurrence of monogenetic diseases such as Huntington Disease. Direct mutation analysis for Huntington disease [HD] became possible in 1993. The use of such tests raises a number of ethical, legal and social issues which are usually discussed in the field of patient's rights and medical ethics. However, in the context of predictive genetic tests a key question arises which lies beyond the concept of rights, namely, what should we want to know about our future or what is the best condition to know about our health future? According the classic medicine, it has become accepted that respecting the autonomy of patients justifies their right to know but however recently, commentators have asked whether such respect also justifies patient's right not to know; that is, their right to remain in ignorance. In the field of using genetic test for predetection of Huntington disease some main ethical issues are consent and privacy, reproductive decisions in HD mutation carriers after predictive testing for HD and to identify factors that play a role in decision-making, problems associated with suicidal ideation and suicide in HD, minimizing harm of predictive molecular testing for HD patients, health insurance discrimination of HD patients and also whether people have a duty to pass on the positive results of their genetic tests about HD to relatives who are at risk from the same disease, and, should they refuse, whether physicians and genetic counselors have the duty to do so

Language: fa