Frequently asked questions about genetic counseling

What if I don't have much information about my family?

Although a large family may provide more clues to interpreting hereditary risk, many of us have small families or limited information available about our family's past. Sometimes various strategies can be used to find out more information such as contacting relatives, searching for medical records or obtaining copies of death certificates.

What are the limitations of genetic testing?

Because testing techniques vary, it is important that your genetic counseling team explains the method of testing being used to look for a mutation and the chances that the method will find a mutation. Different methods have different levels of sensitivity, and therefore, even with the best technology, in some cases testing may not be able to find an existing cancer-causing mutation for you or your family.

Are my test results confidential?

Test results will be part of your medical record and, as all medical records, they will never be shared with anyone other than yourself without your permission, as the law indicates. If your health insurance company paid for your testing, the insurer could ask for the test result. The pros and cons of disclosing your result to others will be discussed with you. Participation in a research study is strictly confidential, as outlined in the requisite informed consent document provided to all study participants.

What are the psychological effects of testing?

Individuals differ in their thoughts about genetic testing for cancer risk, what risk means to them and ways to manage risk. They might feel that the knowledge gained from testing, regardless of the test result, helps them to feel less uncertain and to make better health care decisions armed with more knowledge. They might feel relieved to know that a genetic change was responsible for cancer rather than something about their lifestyle or environment. Others prefer not to know, or decide that the information learned from testing would not be useful to them, perhaps in that it would not change their health care management or provide information for other family members.

Genetic testing can also affect family relationships. If a family member has a mutation, a relative who learns that she or he does not have the mutation may feel guilty for being spared. People in whom a mutation is identified may feel a change in self-image, fear of the future, anger, surprise, worry or guilt for possibly passing a mutation on to their children. The inability to identify a mutation in a family could also be upsetting to some people. These are all normal reactions.

Some people seek psychological counseling prior to or after testing to help cope with decisions about testing and the implications of test results.

What about possible discrimination due to having a disease-associated mutation?

There has been concern that people identified as at high risk for cancer could be discriminated against when obtaining or retaining health insurance, disability insurance and life insurance, and when obtaining or retaining employment. Further, having a cancer-prone genetic makeup could lead to social stigma and social discrimination in terms of choice of schools or careers, adoption, and even dating and marriage relationships.