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Genetic markers and the majority's right not to know

✍ Scribed by Jacob Appel; Joseph H. Friedman

Publisher
John Wiley and Sons
Year
2004
Tongue
English
Weight
41 KB
Volume
19
Category
Article
ISSN
0885-3185

No coin nor oath required. For personal study only.

✦ Synopsis

Ethical issues frequently arise in the study of genetic disorders, particularly autosomal dominant diseases for which gene testing is commercially available. We wish to discuss a problem that arose in a study of Machado Joseph disease (MJD, spinocerebellar ataxia type 3, SCA 3) by Friedman et al. 1 One of the authors (J.H.F.) observed that 5 of 6 patients with genetically confirmed MJD also described symptoms suggestive of REM sleep behavior disorder (RBD). 2 One patient described RBDsuggestive behavior preceding the onset of cerebellar dysfunction by a decade. J.H.F. followed up with a small study in which patients, families and friends attending a biannual MJD clinic were asked to fill out a questionnaire concerning RBD. 1

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