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June 18, 2013
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Cystic Fibrosis Carrier Screening (cont.)

Why Not Be Screened?

There may be reasons you would choose not to have cystic fibrosis (CF) carrier testing.

  • You think that your risk of being a carrier is low. This may be true if you are an African American or an Asian American. The incidence of CF is lower in these groups.
  • You are already pregnant and the information obtained from testing will not affect your decision to continue your pregnancy. Remember, though, that CF test results can provide valuable information for the care of your unborn child.
  • Carrier testing is expensive. You may decide not to have testing if your insurance does not pay for it.
  • Testing does not identify all people who have a mutation in the CF gene. There is a small chance that you are a carrier even if the results are normal (negative).

Other Places To Get Help

Organizations

Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, MD 20814
Phone: 1-800-FIGHT CF (1-800-344-4823)
(301) 951-4422
Fax: (301) 951-6378
Email: info@cff.org
Web Address: www.cff.org

The CFF coordinates, supports, and accredits cystic fibrosis centers and programs, supports research, and advocates for patients. You can find information about things like treatment, care centers, clinical trials, and staying healthy. You can also buy medicines from the online pharmacy.


Genetic Alliance
4301 Connecticut Avenue NW
Suite 404
Washington, DC 20008-2369
Phone: 1-800-336-GENE (1-800-336-4363)
(202) 966-5557
Fax: (202) 966-8553
Email: info@geneticalliance.org
Web Address: www.geneticalliance.org

The Genetic Alliance is an international organization made up of millions of people with genetic conditions and more than 600 advocacy, research, and health care organizations that represent their interests. The Alliance builds partnerships to promote healthy lives for all those living with genetic conditions.

The Genetic Alliance promotes healthy lives by working to speed the translation of genetic advances into quality and affordable health care, public awareness, and consumer-centered public policies.


eMedicineHealth Medical Reference from Healthwise

This information does not replace the advice of a doctor. Healthwise disclaims any warranty or liability for your use of this information. Your use of this information means that you agree to the Terms of Use. How this information was developed to help you make better health decisions.

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