| Predictive Test Guidelines - Guidelines for the Molecular Genetics Predictive Test in Huntington's Disease. Recommendations concerning the use of a predictive test for the detection of Huntington's disease (HD) were drawn up by a
committee consisting of representatives of the International Huntington Association (IHA) and the World Federation of Neurology (WFN) Research Group on Huntington's Chorea.
HDSA Testing Guidelines - Guidelines for Genetic Testing for Huntington's Disease by the Huntington's Disease Society of America, Inc. The intent is to assist health care professionals in administering the genetic test for Huntington's disease and to protect the well-being of those who choose to be tested.
Task Force
on Genetic Testing - part of the DOE-NIH Working Group on Ethical, Legal
and Social Implications of the Human Genome Project, has concluded a
two-year study of genetic testing in the United States. View their published
recommendations which are designed to help ensure that such tests are safe
and effective. |
| Recommended Reading written by Nancy
S. Wexler,
Ph.D., President of the Hereditary Disease Foundation Clairvoyance
and Caution: Repercussions from the Human Genome Project in The Code
of Codes: Scientific and Social Issues in the Human Genome Project. D.J. Kevles
and L.Hood (Eds.) Harvard University Press, 1992, 211-243
"Genetic
'Russian Roulette': The Experience of Being 'At Risk' for Huntington's
Disease. Genetic Counseling: Psychological Dimensions, 1979, Academic
Press, 199-220 "Living Out the Dying:
HD, Grief and Death":
Wexler, Nancy Sabin, ERIC Reports (Washington, D.C.: National Institute
of Education, 1975).
The Oracle
of DNA in Molecular Genetics of Neuromuscular Disease. L.P. Rowland, Editor, Oxford University Press, 1989
Presymptomatic
Testing For Huntington's Disease: Harbinger of the New Genetics
in Genetics, Ethics And Human Values. Human Genome Mapping, Genetic
Screening And Gene Therapy. Proceedings of the XXIVth CIOMS Round Table
Conference. Edited by Z. Bankowski and A.M. Capron. Tokyo and Inuyama City,
Japan, 22-27 July 1990
"The Tiresias Complex:
Huntington's Disease As a Paradigm of Testing for Late-Onset Disorders.
Department
of Neurology and Psychiatry, College of Physicians and Surgeons, Columbia
University
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