Journal
AMERICAN JOURNAL OF MEDICAL GENETICS PART A
Volume 152A, Issue 7, Pages 1774-1780Publisher
WILEY
DOI: 10.1002/ajmg.a.33432
Keywords
Huntington disease; prenatal testing; guidelines; ethics
Categories
Funding
- NIH/NIGMS [GM07526]
- National Urea Cycle Foundation
- Greenwall Foundation Faculty Scholars Program in Bioethics
- NIH/NHGRI [R01 HG004333, HG004853]
- [DK081735-01A1]
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During the last decade, the field of human genome research has gone through a phase of rapid discovery that has provided scientists and physicians with a wide variety of research tools that are applicable to important medical issues. We describe a true case of familial Huntington disease (HD) in which we modified personal details to protect patient's privacy, where the proband at risk preferred not to know his disease status but wanted to know the status in his unborn child. Once we found the father to be negative, the case raised an important ethical question regarding the management of this as well as future pregnancies. This article discusses the arguments for and against the right not to know of one's carrier status, as well as professional obligations in the context of withholding unwanted information that may have direct implications not only for the patient himself but also for other family members. HD has served as a model for many other adult onset genetic diseases in terms of carrier testing guidelines. Hence, we feel it is time to revisit the issue of prenatal testing for HD and consider updating the current recommendations regarding the patient's right to genetic ignorance, or the right not to know genetic information. (C) 2010 Wiley-Liss, Inc.
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