What is Cystic Fibrosis?
Cystic Fibrosis (CF) is a genetic condition affecting the ability to secrete mucous fluids normally. Individuals with CF commonly have problems with the lungs, digestive, and reproductive systems. They often suffer from pulmonary infections and organ damage due to difficulty in clearing secretions. The severity of CF varies from person to person.

The condition does not affect intelligence, appearance, or development. There is no cure for CF currently. The average life expectancy is 30 years, but children born today with CF may live longer as treatments improve. Currently, CF is diagnosed by blood testing when a pediatrician suspects the condition during childhood.

How common is CF?

European Caucasian:	1/3,000	African American:	1/15,300
Ashkenazi Jewish:	1/3,300	Asian:	1/32,000
Hispanic:	1/8,500

Could I have a child with CF? How do I know if I carry the gene?
CF is a recessive condition, therefore IF BOTH PARENTS ARE CARRIERS, there would be a 25% chance of the child having the disease. Carrier frequency varies by ethnic background:

European/Caucasian:	1/25	African American:	1/62
Ashkenazi Jewish:	1/29	Asian:	1/90
Hispanic:	1/46

A blood test can be performed to detect if you are a carrier, but accuracy also varies by ethnic background. The test will detect the following percentage of carriers:

European/Caucasian:	80%	African American:	69%
Ashkenazi Jewish:	97%	Asian:	30%
Hispanic:	57%

How much does the testing cost?
As of January 2002, ACOG recommends discussing CF testing with all couples. However, this recommendation does not imply that insurance will necessarily cover the cost of the screen. Coverage varies, and patients need to contact their insurer directly.
Current lab charges are approximately:

25 mutation screen (Unilab)	$140.00
87 mutation screen (Genzyme)	$265.00
251 mutation screen (Dianon)	$314.00

What if my spouse and I are carriers? Can the baby be tested?
Fetal testing can be done via amniocentesis. Results may take several weeks to complete.

____ Yes, I wish to have my blood drawn for cystic fibrosis carrier testing.
             It is my responsibility to check with my insurance regarding coverage.

____ No, I do not want to have my blood drawn for cystic fibrosis carrier testing.

Signature:__________________ Date:_________________

ACOG recommendations: (January 2002)
CF carrier testing is offered to all European/Caucasian couples, those with a family history of CF, or partners of individuals with CF. Written informed consent is required for these groups.

Individuals of other ethnic backgrounds should be provided with written material about testing, but written consent is not mandatory.

Los Olivos Policy:
Given the multiethnic background of many or our patients, consent information is to be given to all couples by nurse at first prenatal visit. They should be informed that screening is optional, but if elected, best performed early in the pregnancy. They should return their signed consent to testing/refusal of testing at the first or second prenatal visit.