Why Would I Not Be Tested?

You may decide not to be tested because:

• You do not have symptoms of lung disease.
• No one in your family has AAT deficiency or lung or liver disease.
• You would be worried if you knew that you might get lung or liver disease some day.
• You do not smoke and you already are taking good care of yourself. You think there is nothing more you could do to prevent or delay the disease.
• The test cannot predict whether you will ever have symptoms of this condition.
• You do not have insurance or your insurance would not pay for the test.
• You are worried that the test results might cause problems for you at work or make it hard for you to get health insurance. It's important to know that a law in the United States, called the Genetic Information Nondiscrimination Act of 2008 (GINA), protects people who have genetic differences that may affect their health. GINA prevents employers and health insurance companies from using genetic information about people to affect decisions. This law does not cover life insurance, disability insurance, or long-term care insurance.

What Is Genetic Counseling?

Information from genetic testing can have a big impact on your life. Ask to have genetic counseling before making a decision about testing. Genetic counselors are trained to explain the test and its results, but you make the decision about whether to have the test. A genetic counselor can help you make well-informed decisions. Genetic counseling can help you and your family:

• Understand medical facts, including what causes diseases, how a diagnosis is made, and what you may be able to do to help you manage a disease.
• Understand how your family history contributes to the development of a disease.
• Help you learn about caring for a family member with a genetic disease, including getting referrals to specialists or joining support groups.

Genetic counselors are trained to help you and your family make informed decisions. They are sensitive to the physical and emotional aspects of these decisions. Your privacy and confidentiality are carefully protected.