Consensus Development Conference on Genetic Testing for Cystic Fibrosis

Office of the Director, National Human Genome Research InstituteFOR IMMEDIATE RELEASE, Wednesday, Apr. 9, 1997, Bill Hall, 301-496-4819, Sharon Durham

The National Institutes of Health (NIH) will hold a Consensus Development Conference on Genetic Testing for Cystic Fibrosis. The conference will be held April 14-16, 1997 in the main auditorium of the William H. Natcher Building on the NIH campus in Bethesda, Maryland. A news conference will conclude the 3-day meeting at 1 p.m. EST on Wednesday, April 16, 1997.

In the early 1990's a test was developed to identify individuals who carried the genetic mutation for cystic fibrosis. Because of concern that this test might be inappropriately or prematurely used, a number of genetic and health professional organizations issued recommendations for 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.

After 11/2 days of presentations and audience discussion at this consensus conference, an independent, nonadvocate, non-Federal consensus panel will weigh the totality of the evidence presented and write a draft consensus statement outlining their conclusions and recommendations on genetic testing for cystic fibrosis. The panel's statement will address the following 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 panel will present its draft statement to the public for comment on the morning of the third and final day of the conference. Following this public comment session, the panel will release its final consensus statement at the news conference and take questions from the media. The consensus statement is the report of an independent panel and is not a policy statement of the NIH or the Federal Government.

The consensus panel will be chaired by R. Rodney Howell, M.D., Professor and Chairman, Department of Pediatrics, School of Medicine, University of Miami, Miami, Florida. Dr. Howell will moderate the news conference.

The NIH Consensus Development Program was established in 1977 as a form of "science court" to resolve in an unbiased manner controversial topics in medicine. To date, NIH has conducted 105 such conferences addressing a wide range of controversial medical issues important to health care providers, patients, and the general public. An average of six consensus conferences are held each year.

Additional information about this conference, including the meeting agenda and area hotels, is also available at the NIH Consensus Development Program web site at http://consensus.nih.gov. To register for the conference, call 301-770-3153.