How to Cite this Article: Erez A, Plunkett K, Sutton VR, McGuire AL. 2010. The right to ignore genetic status of late onset genetic disease in the genomic era; prenatal testing for Huntington disease as a paradigm. Am J Med Genet Part A 152A:1774–1780.
The right to ignore genetic status of late onset genetic disease in the genomic era; Prenatal testing for Huntington disease as a paradigm†
Article first published online: 25 JUN 2010
Copyright © 2010 Wiley-Liss, Inc.
American Journal of Medical Genetics Part A
Volume 152A, Issue 7, pages 1774–1780, July 2010
How to Cite
Erez, A., Plunkett, K., Sutton, V.R. and McGuire, A.L. (2010), The right to ignore genetic status of late onset genetic disease in the genomic era; Prenatal testing for Huntington disease as a paradigm. Am. J. Med. Genet., 152A: 1774–1780. doi: 10.1002/ajmg.a.33432
- Issue published online: 25 JUN 2010
- Article first published online: 25 JUN 2010
- Manuscript Accepted: 6 MAR 2010
- Manuscript Received: 16 JUL 2009
- Huntington disease;
- prenatal testing;
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. © 2010 Wiley-Liss, Inc.