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Predictive testing for huntington disease: A psychologist's view

✍ Scribed by Kessler, Seymour


Publisher
John Wiley and Sons
Year
1994
Tongue
English
Weight
745 KB
Volume
54
Category
Article
ISSN
0148-7299

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✦ Synopsis


After the discovery of genetic markers closely linked t o the gene for Huntington disease (HD) on chromosome 4 [Gusella et al., 19831, several centers in the U.S. and elsewhere began to offer a presymptomatic test for individuals at risk for this disorder. Since the mid-198O's, more than 1,000 persons have undergone testing world-wide [World Federation of Neurology Research Group on Huntington's Disease, 19931, and reports from the various testing centers describing their protocols and findings and elaborating on the ethical, legal, and psychological problems encountered have gradually made their way into print. The two papers [Codori et al., 1994; Codori and Brandt, 19941 published in this issue of Neuropsychiatric Genetics, come from The Johns Hopkins University School of Medicine, one of the major institutions involved with research and clinical services devoted to HD, and are a welcome addition to this literature.

Codori et al.

[ 19941 have put together in one cohesive picture three diverse observations:

  1. At-risk individuals have participated in predictive testing despite the fact that HD has no cure and no adequate treatment, and in the face of the possibility that the discovery that they carry the HD gene may worsen rather than improve the quality of their lives andor that of their families.

  2. In the period before the predictive test was available, several surveys showed that many at-risk individuals expressed an interest in being tested [Stern


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Although a support person is required by many centers during the predictive testing protocol for Huntington disease (HD), little is known about the psychosocial impact of predictive testing on persons serving in this role. Eighteen adults who were support persons during predictive HD testing in one