Sponsored by the U.S. Department of Energy Human Genome Program
Human Genome News Archive Edition
Human Genome News, July 1993; 5(2)
Elizabeth Thomson, coordinator of statewide genetic counseling services at the University of Iowa from 1980 to 1993, has joined the Ethical, Legal, and Social Implications (ELSI) Branch of the National Center for Human Genome Research (NCHGR). Thomson will serve as coordinator of the research portfolio related to genetic testing, education, and counseling and manage the cystic fibrosis (CF) consortium. Eric Juengst, Acting Chief of the ELSI Branch, says that Thomson's extensive clinical background will be "invaluable to the ELSI program."
The ELSI Branch examines issues such as professional standards in introducing new genetic testing; informed consent in genetic research and testing; confidentiality of genetic test results; and fairness in the use of genetic information to avoid discrimination and social stigmatization. In her capacity as a genetic counselor and administrator, Thomson has had ample opportunity to observe directly the impact of genetic tests on individuals and families. "One goal of ELSI is to ensure that the benefits of developing genetic technologies are realized while potential risks are minimized," she said.
The CF consortium involves projects supported by the NIH National Institute of Child Health and Human Development, the National Center for Nursing Research, NCHGR, and National Institute of Diabetes and Digestive and Kidney Diseases. To assist in shaping standards of care and policies in the emerging field of genetic testing and counseling, the consortium serves as a prototype in the study of issues surrounding inherited diseases. The National Cancer Institute and NCHGR are cosponsoring a similar interdisciplinary evaluation of genetic diagnostic technologies in disorders such as breast, colon, and other forms of cancer.
Thomson will also be responsible for coordinating outreach efforts with professional and lay groups involved in the delivery of clinical genetic services. The NCHGR ELSI Branch has initiated discussions with professional societies and other health agencies to identify ways of dealing with the acute shortage of adequately trained genetic counselors. The branch has also organized activities with consumer groups such as the Alliance for Genetic Support Groups and individuals who have disabilities. These activities are designed to heighten the awareness of health professionals about consumer and disabilities issues.
Thomson received the B.S. degree in nursing from Coe College and the M.S. in preventive medicine and environmental health from the University of Iowa. She became the first genetic consultant for the Iowa State Department of Health in 1976 and was certified by the American Board of Medical Genetics in 1982. From 1986 to 1991, Thomson was Assistant Project Director of the Great Plains Genetic Services Network. A founding member of the International Society of Nurses in Genetics, Inc., Thomson also belongs to the American Society of Human Genetics, the American College of Medical Genetics, and the American Nurses Association.
[Sharon Durham, NCHGR]
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Human Genome Program, U.S. Department of Energy, Human Genome News (v5n2).
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.