Family Gene Research

Expert Quote

“In my family, half the people wanted to know the genetic information and half wanted to keep it a secret. That was hard when the results came out and it remains hard now, because the information is still a reality for many of us and keeping a secret like this is difficult. ”

Marisa Weiss M.D., president and founder, breast radiation oncologist, Philadelphia, PA

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If you identify a potential case of breast or ovarian cancer in your family, it should be confirmed with medical records and a pathology report whenever possible. For example, if one of your aunts died of liver cancer, you need to find out if she had breast cancer that spread (metastasized) to the liver, or cancer that actually started in the liver. If your grandmother had "stomach cancer," further evaluation may show that she really had ovarian cancer that spread inside the abdomen, affecting her stomach.

Family gene research can be complicated. It may require:

• cooperation between family members
• having people sign a document stating that they have been fully informed of the benefits and risks of testing
• having people sign release forms so you can access relevant medical information

Some family members may insist on maintaining privacy. No one should ever be coerced into participating.

Some people may feel too frightened to discuss breast cancer openly. As a result, you may not get much information when you ask about deceased family members. Years ago, few people were even told that a family member had cancer.

If you are an adopted child, your parents may have medical information about your birth parents that can help in building an understanding of your biological history.