|
Policy Statement Archives
|
The American Society of Human
Genetics Statement on Cystic
Fibrosis Screening |
AJHG, 46:393, 1990 |
-
C. Thomas Caskey, M.D.,
President 1990; Michael M. Kaback, M.D.,
President 1991; and Arthur L. Beaudet,
M.D., Board of Directors, 1988-90; as
Read by Luca L. Cavalli-Sforza, M.D.,
President 1989, at the 40th Annual
Meeting of The American Society of Human
Genetics in Baltimore
The recent identification of
the gene associated with cystic fibrosis
(CF) offers great hope for new treatments
for this common disease. Even more
immediately, it is now possible to identify
healthy individuals who carry the CF trait.
However, the current test detects only 70%
of carriers, and there is little experience
in the delivery of such complex information
to large populations. Accordingly, there are
serious reservations, and there is no
concensus among geneticists regarding
widespread screening for CF carriers at this
time.
However, there is consensus on a number of
issues. First, carrier testing should be
offered to couples in which either partner
has a close relative affected with CF.
Second, one or a few federal, foundation, or
privately supported pilot programs should be
conducted as soon as possible in order to
gather more data regarding laboratory,
educational, and counseling aspects of
screening. Third, there is an immediate need
for centralized quality control of
laboratories conducting these tests. Fourth,
it will be appropriate to begin large-scale
population screening in the foreseeable
future, once the test detects a larger
proportion of CF carriers and more
information is available regarding the
issues surrounding the screening process.
Until that time, it is considered premature
to undertake population screening.
Finally, while it is recognized that testing
of highly motivated individuals in the
general population may occur, it is the
position of The American Society of Human
Genetics that routine CF carrier testing of
pregnant women and other individuals is NOT
yet the standard of care in medical
practice.
A working group of The American Society of
Human Genetics is being formed to further
explore the issues raised by this exciting
new technology
 Back
to Previous Page
|
