|FOR IMMEDIATE RELEASE
Wednesday, Apr. 9, 1997
Development Conference on Genetic Testing for Cystic Fibrosis
- What is the current state
of knowledge regarding cystic fibrosis natural history, epidemiology,
genotype-phenotype correlations, treatment, and genetic testing in
- 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
- 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
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.