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Resources for Families with HD
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| HD Citations, Library Resources
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Recommended Reading
| Research Updates
| Testing Info
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Recommended Reading
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The bibliography on Huntington's disease is vast, and has expanded
enormously over the past decade. The following sources offer an historical
overview in English of basic and clinical research on Huntington's and of current
ethical debates surrounding presymptomatic testing for HD. The annual
Index Medicus is the best guide to current biomedical publication. For a comprehensive list of Huntington's disease citations, check out the
HD section at the NIH web site. The National Institutes of Health also
publishes Huntington's Disease: Hope through Research, an informative booklet, that covers most aspects of the disease.
PubMed, a
service of the National Library of Medicine, provides access to over 12 million
MEDLINE citations back to the mid-1960's and additional life science
journals. PubMed includes links to many sites providing full text articles
and other related resources.
Also, view the comprehensive list of
Workshop Reports
for more
reference material.
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Barbeau, A., T.N.Chase, and
N.S. Wexler, Advances in
Neurology, Vol.
23: "Huntington's Disease" (New York: Raven Press, 1979). Overview of research
from 1972 to 1978.
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Bishop, Jerry E. and Michael Waldholz,
Genome (New York: Simon and
Schuster, 1990). Popular treatment of the genetic revolution of the 1970s and
1980s, with three chapters on Huntington's research.
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Cimons, Marlene,
ALL in the FAMILY: Using Families as Laboratories, Doctors Are Searching for Clues to Cancer and Other Deadly
Diseases
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Druss, Richard G., The Psychology of Illness: In Sickness and in Health
(Washington, D.C.: American Psychiatric Press, 1995). Readable guide to
understanding the psychology of medical illness.
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Folstein, Susan, Huntington's Disease: A Disorder of Families
(Baltimore: Johns Hopkins Press, 1989). Textbook by a prominent psychiatrist
who headed the Huntington's Center without Walls at Johns Hopkins
University.
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Gray, Alison, Genes & Generations: Living with Huntington's
Disease (Wellington Huntington's Disease Association, 1995). Stories, in their
own words, of people living with Huntington's disease.
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Harper, Peter S., Major Problems in Neurology, Vol. 22: "Huntington's
Disease" (Philadelphia: W.B. Saunders, 1991). Excellent collection of essays by
different researchers on various aspects of Huntington's, pertaining both to
clinical management and molecular genetics.
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Kevles, Daniel J. In the Name of Eugenics: Genetics and the Uses of
Human Heredity (Berkeley: University of California Press, 1986). History of the
eugenics movements in England and the United States.
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Kyle, Duncan, The Dancing Men (Glasgow, Scotland: Fontana Collins,
1985). Mystery centering on U.S. presidential candidate at risk for
Huntington's.
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Myrianthopoulos, Ntinos C. et. al.,
A Centennial Bibliography of
Huntington's Chorea (Louvain: Leuven University Press, 1974). First major
bibliography in multiple languages of research publications on
Huntington's.
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Negrette, Americo. Chorea de Huntington (Maracaibo: Universidad de
Zulia, 1963). Study of the communities around Lake Maracaibo, Venezuela with
extremely high prevalence of Huntington's, by the physician who first diagnosed
the disease in Venezuela. (Translated by Alice Wexler.)
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Report of the Commission for the Control of Huntington's Disease and
its Consequences (Washington D.C.: National Institutes of Health, 1977).
Multivolume collection of public testimony, work group reports, position papers
and recommendations of this Commission, Marjorie Guthrie, Chair; Milton Wexler,
Vice-Chair; Nancy S. Wexler, Executive Director.
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Vine, Barbara (Ruth Rendell), The House of Stairs (New York: Harmony
Books, 1989). Novel by well-known British mystery writer with a narrator at risk
for Huntington's.
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Watson James D., Andrew Berry (Contributor),
DNA: The Secret of Life (Random
House, April 2003). Winner of the Nobel Prize and author of The Double
Helix.
This is an outstanding book, perfect for the 50th
anniversary of the discovery of the structure of DNA, that reviews the history
of genetics and the many advances that have been made in genetic research.
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Wexler, Alice.
Mapping Fate: A Memoir of Family, Risk
and Genetic Research (Berkeley and Los Angeles: University of
California Press, 1996). -
Wexler, Milton. A Look Through the Rearview Mirror
(Xlibris Corporation,
July 2002).
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Recommended Reading written by
Nancy S. Wexler,
Ph.D., President of the Hereditary Disease
Foundation "Prejudice in a
portrayal of Huntington's disease" - a review by Nancy S. Wexler and
Michael D. Rawlins of Ian McEwan's novel Saturday. [.pdf
version]
“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
“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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