[Federal Register Volume 62, Number 65 (Friday, April 4, 1997)]
[Notices]
[Page 16170]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 97-8593]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Consensus Development Conference on Genetic Testing for Cystic 
Fibrosis

    Notice is hereby given of the NIH Consensus Development Conference 
on ``Genetic Testing for Cystic Fibrosis,'' which will be held April 
14-16, 1997, in the Natcher Conference Center of the National 
Institutes of Health, 9000 Rockville Pike, Bethesda, Maryland 20892. 
The conference begins at 8:30 a.m. on April 14, at 8:30 a.m. on April 
15, and at 9:00 a.m. on April 16.
    At the beginning of this decade, a test was developed which could 
identify individuals who carried the genetic mutation associated with 
cystic fibrosis. Concerned that this test might be inappropriately or 
prematurely used, a number of genetic and health professional 
organizations issued recommendations on its use. These groups 
considered the circumstances under which the tests should be offered 
and the populations that would potentially benefit. In almost every 
case, recommendations were made against using the test for large-scale 
population-based screening until more sensitive tests were developed 
and more had been learned about the risks and benefits of genetic 
testing for individuals and their families. Several statements called 
for additional support for research on the educational, laboratory, 
counseling, ethical, and cost/benefit issues associated with the 
delivery of population-based screening for cystic fibrosis. Since that 
time new research has yielded a large body of new data on these issues.
    This conference will bring together the research investigators, 
health care providers, epidemiologists, geneticists, ethicists and 
other experts, as well as representatives of the public, to present and 
discuss the latest data.
    After 1\1/2\ days of presentations and audience discussion, an 
independent, non-Federal consensus panel will weigh the scientific 
evidence and write a draft statement that it will present to the 
audience on the third day. The consensus statement will address the 
following key questions:

--What is the current state of knowledge regarding cystic fibrosis 
natural history, epidemiology, genotype-phenotype correlations, 
treatment, and genetic testing in various populations?
--What has been learned about genetic testing for cystic fibrosis 
regarding (public and health professional) knowledge and attitudes, 
interest and demand, risks and benefits, effectiveness, cost, and 
impact?
--Should cystic fibrosis carrier testing be offered to: (1) individuals 
with a family history of cystic fibrosis; (2) adults in the 
preconception or prenatal period; and/or (3) the general population?
--What are the optimal practices for cystic fibrosis genetic testing 
(setting, timing, and the practices of education, consent, and 
counseling)?
--What should be the future directions for research relevant to genetic 
testing for cystic fibrosis and, more broadly, for research and public 
policy on genetic testing?

    The primary sponsors of this meeting are the National Human Genome 
Research Institute and the NIH Office of Medical Applications Research. 
The conference is cosponsored by: the National Institute of Diabetes 
and Digestive and Kidney Diseases; the National Heart, Lung, and Blood 
Institute; the National Institute of Child Health and Human 
Development; the NIH Office of Rare Diseases; the National Institute of 
Mental Health; the National Institute of Nursing Research; the NIH 
Office of Research on Women's Health; the Agency for Health Care Policy 
Research; and the Centers for Disease Control and Prevention.
    Advance information on the conference program and conference 
registration materials may be obtained from: Rose Salton, Technical 
Resources International, Inc., 3202 Tower Oaks Blvd., Suite 200, 
Rockville, Maryland 20852, (301) 770-3153, [email protected]. The 
consensus statement will be submitted for publication in professional 
journals and other publications. In addition, the statement will be 
available beginning April 16, 1997 from the NIH Consensus Program 
Information Center, P.O. Box 2577, Kensington, Maryland 20891, phone 1-
888-NIH-CONSENSUS (1-888-644-2667) and from the NIH Consensus Program 
site on the World Wide Web at http://consensus.nih.gov.

    Dated: March 26, 1997.
Ruth L. Kirschstein,
Deputy Director, NIH.
[FR Doc. 97-8593 Filed 4-3-97; 8:45 am]
BILLING CODE 4140-01-M