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Related Conference Materials
 Program
& Abstracts (PDF file, 1.2 MB)
NLM
Bibliography
News
Release
CME
Online
List of Publications Related to this Consensus Conference
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Genetic Testing for
Cystic Fibrosis
April 14-16, 1997
Vol. 15, No. 4
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Genetic testing for CF should be
offered to adults with a positive family
history of CF, to partners of people with
CF, to couples currently planning a
pregnancy, and to couples seeking prenatal
care. The panel does not recommend
offering CF genetic testing to the general
population or newborn infants. The panel
advocates active research to develop
improved treatments for people with CF and
continued investigation into the
understanding of the pathophysiology of
the disease. Comprehensive educational
programs targeted to health care
professionals and the public should be
developed using input from people living
with CF and their families and from people
from diverse racial and ethnic groups.
Additionally, genetic counseling services
must be accurate and provide balanced
information to afford individuals the
opportunity to make autonomous decisions.
Every attempt should be made to protect
individual rights, genetic and medical
privacy rights, and to prevent
discrimination and stigmatization. It is
essential that the offering of CF carrier
testing be phased in over a period of time
to ensure that adequate education and
appropriate genetic testing and counseling
services are available to all persons
being tested.
Read
full NIH Consensus Statement
Download
full NIH Consensus Statement (PDF
file, 352K)
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NOTE:
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NIH Consensus Statements are prepared
by a nonadvocate, non-Federal panel of experts, based on
(1) presentations by investigators working in areas
relevant to the consensus questions during a 2-day public
session; (2) questions and statements from conference
attendees during open discussion periods that are part of
the public session; and (3) closed deliberations by the
panel during the remainder of the second day and morning
of the third. This statement is an independent report of the panel and is
not a policy statement of the NIH or the Federal Government.
The statement reflects the panel’s assessment of medical knowledge
available at the time the statement was written. Thus, it provides
a "snapshot in time" of the state of knowledge on the conference topic.
When reading the statement, keep in mind that new knowledge is
inevitably accumulating through medical research.
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