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Human Genome News Archive Edition

Human Genome News, March 1991; 2(6)

NCHGR, Health Groups Share Perspectives

On January 14, the NIH National Center for Human Genome Research (NCHGR), the Alliance of Genetic Support Groups, and Research! America presented "The Human Genome Project: New Tools for Tomorrow's Health Research." The program was developed especially to familiarize members of voluntary health associations with Human Genome Project goals and to address questions about how genome research will improve hereditary disease research. The half-day program at the NIH campus in Bethesda, Maryland, featured speakers who shared their experiences, perspectives, and predictions about various aspects of the project and its contribution to human genetic research.

In opening remarks to the 90 patient advocates who attended, NIH Acting Director William Raub highlighted the universal application of the Human Genome Project's scientific developments. He explained that high-resolution chromosome maps, yeast artificial chromosome technology, sequence tagged sites, and new sequencing technologies will enhance the range of NIH efforts to "determine the protein product [and] to identify the chromosome and the exact location of genes on the chromosome. As the Human Genome Project develops, the interplay between our [national] institutes' missions will become ever stronger. The wisdom of this organized, up-front investment in mapping and then sequencing will pay off many times over in the specific disease areas that make up the constituent interests of the NIH."

Thomas Caskey (Baylor College of Medicine) emphasized the importance of Human Genome Project goals to develop:

  • genetic and physical maps,
  • new methods to identify genes, and
  • technology for transfer of research information to laboratories and individuals.

He also stressed the structuring of these scientific advances into a socially acceptable framework and pointed out that the realization of these goals will be a "significant boost" to patients and families with inherited diseases.

Nancy Wexler (Hereditary Disease Foundation and Columbia University), explaining the value of placing markers on chromosomes to help pinpoint genes, stressed the staggering amount of DNA ultimately to be sequenced. "It's essential that this task be done in an organized and coordinated manner," she said. "Each individual voluntary association couldn't begin to tackle a project like this." She said the Human Genome Project offers tremendous opportunities for collaboration among scientists in all fields in helping to complete the fine details of the human genome picture, so that all genetic diseases might one day be understood.

In anticipation of future genetic testing and screening programs, Robert Murray (Howard University School of Medicine) recounted the unfortunate errors that were made when testing for sickle cell anemia began in the 1970s. He suggested that future testing programs do the following:

  1. Educate the population to be tested about the disease and the possible implications of positive results.
  2. Involve members of that community in the development of conditions under which the test would be given and interpreted.
  3. Be sensitive to social stigmatization.
  4. Educate the community at large so it can understand the true implications of a positive test result.

NCHGR Ethical, Legal, and Social Implications Program Director Eric Juengst offered an overview of NIH efforts to anticipate cultural and social implications of new and more accurate genetic tests that will be developed as genome research is translated into medical practice. He noted the following NCHGR program functions:

  • To support social and scientific research into the identification of potential social problems and ways to address them.
  • To develop public policy options to safeguard the confidentiality of genetic information.
  • To educate health professionals and the lay public about issues raised by new genetic information.

Following individual presentations, the speakers formed a panel to answer and comment on many thought-provoking questions from the audience. Members of hereditary disease groups were invited to participate in the Human Genome Project by volunteering for family studies, which form the heart of disease-gene mapping, and by providing feedback to ensure that the ELSI program fits the public's needs.

In closing, Nancy Wexler explained that isolating a disease gene would not mean an "instant panacea," but she speculated about the kinds of prevention and treatment approaches that might be taken after the gene is discovered. She said that rapidly advancing technology is providing encouragement that eventually all genes will be located. While members of hereditary disease groups may sometimes feel discouraged and alone, she said, they should realize that together they can be a tremendously powerful constituency. The Human Genome Project provides a way for them to combine forces to achieve their individual goals more rapidly.

Reported by Sandy O'Connor
NCHGR Office of Communications

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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 (v2n6).

Human Genome Project 1990–2003

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.

Human Genome News

Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.