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
|Cystic Fibrosis Foundation|
|6931 Arlington Road|
|Bethesda, MD 20814|
|Phone: ||1-800-FIGHT CF (1-800-344-4823)|
|Fax: ||(301) 951-6378|
|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.
|4301 Connecticut Avenue NW|
|Washington, DC 20008-2369|
|Phone: ||1-800-336-GENE (1-800-336-4363)|
|Fax: ||(202) 966-8553|
|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.