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Human Genome News, November 1993: 5(4)
Nancy S. Wexler (Columbia University), chair of the Joint DOE-NIH Human Genome Project Ethical, Legal, and Social Issues (ELSI) Working Group and of the ELSI Committee of the international Human Genome Organization, is the recipient of the Albert Lasker Public Service Award for 1993. The award was presented on September 30 at a luncheon and awards ceremony at which Hillary Rodham Clinton was the keynote speaker. The award cited Wexler's work in mobilizing research, policy development, and scientific advocacy in the worldwide effort to find a cure for Huntington's disease (HD) as well as her service as President of the Hereditary Disease Foundation.
Clinton said of this year's recipients, '' These winners join the remarkable group of men and women who have over the decades put health care at the top of our national agenda, men and women whose work has found cures for disease, who have aided the kind of breakthroughs that we've only been able to dream about in the past but now take for granted, men and women who have helped better our health-care system through public awareness and through important legislation.''
Clinton also pointed out that personal genetic data generated through Human Genome Project technology might be used as the basis for discrimination by health-insurance carriers unless health-care reform could be achieved. Clinton's health-care reform committee was provided with the report of the ELSI Working Group task force on genetic information and health insurance. This report, approved by DOE and the Department of Health and Human Services (parent agency of NIH), recommended that access to basic health services should not be conditioned on genetic information.
Wexler, a clinical psychologist, has been involved in the fight against HD since 1968, when she learned that her mother was ill with the genetic condition and that both she and her sister have a 50% chance of developing HD. Her doctoral dissertation on the neuropsychological and emotional consequences of being at risk for HD led to her later appointment as Executive Director of the Commission for the Control of Huntington's Disease and its consequences.
Wexler has led medical expeditions to the shores of Lake Maracaibo in Venezuela to work with the largest extended HD family in the world. From this family, Wexler's team has constructed a multigenerational pedigree with more than 13,000 members and collected over 3,000 blood samples. These samples have also been used in mapping genes responsible for Alzheimer's disease, kidney cancer, and two types of neurofibromatosis.
The Venezuelan samples and pedigrees enabled investigators to pinpoint the gene's precise location, a discovery that many investigators believe will lead to finding a way to prevent or repair HD damage.
Albert Lasker Medical Research awards have been presented continuously for 46 years. Winners receive or share a $25,000 honorarium, a citation highlighting their achievements, and an inscribed statuette of the Winged Victory of Samothrace—the Lasker foundation's traditional symbol of victory over disability, disease, and death.
[Anne Adamson, HGMIS]
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The electronic form of the newsletter may be cited in the following style:
Human Genome Program, U.S. Department of Energy, Human Genome News (v5n4).
The Human Genome Project (HGP) was an international 13-year effort, 1990 to 2003. Primary goals were to discover the complete set of human genes and make them accessible for further biological study, and determine the complete sequence of DNA bases in the human genome. See Timeline for more HGP history.
Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.
