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Familial Pulmonary Fibrosis: Genetic Counseling

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This information was reviewed and approved by Jeff Swigris, DO, MS (9/1/2015).

Genetic counseling is the process of providing individuals and families with information on the nature, inheritance, and implications of genetic disorders to help them make informed medical and personal decisions, and to determine their risk of developing an inherited disease. A genetic counselor can help you to understand your personal risk for pulmonary fibrosis, the risk to other family members and answer questions you may have.

Why is Genetic Counseling Important Before and After Genetic Testing?

Genetic testing is different from other kinds of testing in pulmonary fibrosis, as its results are often complex and difficult to interpret in isolation. For this reason, it is often important to discuss the implications of testing with a qualified genetic counselor before performing the test. For example, it is important to determine who, if anyone, may want to consider DNA testing. More often than not, someone with the disease should be tested first to see if they carry the disease-causing gene before other asymptomatic family members are tested.

Genetic counseling after testing can provide a personalized interpretation of the results, what the results mean for the patient's health, as well as how it impacts other family members. 

Armed with this information, an individual may then make more informed decisions regarding their healthcare.

Family Planning

The optimal time for determination of genetic risk is before pregnancy. It is appropriate to seek genetic counseling (including discussion of potential risks to offspring and reproductive options) for young adults who are affected or at risk.

DNA Banking

DNA banking is the storage of DNA (typically extracted from white blood cells) for possible future use. Because it is likely that testing methodology and our understanding of genes, mutations, and diseases will improve in the future, consideration should be given to banking DNA of affected individuals. DNA banking is particularly relevant when the gene(s) in which disease-causing mutations occur has/have not been identified.


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