Because the nature of genetic testing is so complex, with implications for both the person being tested and his or her family, genetic counseling is an important part of pre- and post-genetic testing. Unlike most medical appointments, a counseling session may be a family affair, with participation of all concerned relatives.
A genetic counselor is a health care professional who is an expert in counseling, human genetics and genetic testing. He or she reviews your family and medical histories to determine if there appears to be a hereditary pattern of disease. A genetic counseling session can last any amount of time, depending upon the situation. Genetic counseling typically includes:
- gathering background medical information about you and your family
- risk assessment for having a genetic disease or mutation
- discussion about genes that may be appropriate for testing, if indicated
- discussion about the risks, benefits and limitations of testing
- providing information on inheritance, the genetic testing procedure, the possible results and what they mean
- informed consent, if genetic testing is indicated and you elect to have it
Genetic counseling will educate you so you can make an informed decision. Genetic counselors are trained to assist you in the decision-making process, and genetic testing is never required.
Because family history is so crucial in assessing for a genetic condition and determining which genes to consider testing, a counselor may request medical records to confirm a diagnosis, especially if you're trying to determine whether a family pattern of cancer is hereditary.
Family member recollections can be inaccurate—who had which disease or even what type of disease. Many conditions either were not discussed or not diagnosed in past decades. A genetic counselor can listen to a family account and help tease out details to better identify potential patterns.
Genetic counselors are committed to protecting the privacy of their patients. They will not contact other family members without your permission, though they may encourage you to share results that might affect the health of your relatives. The Genetic Information Nondiscrimination Act of 2008 (GINA) is a federal law that specifically addresses genetic discrimination in regard to health insurance and employment.
How to find a counselor
You can find a genetic counselor at http://www.nsgc.org, the website for the National Society of Genetic Counselors. The core credentials are a master's degree in the field and certification conferring the designation of certified genetic counselor (CGC).