Direct-to-Consumer Genetic Tests

BY SUE FRIEDMAN

RISKS and RESPONSIBILITIES - A BREAST CANCER ADVOCACY PERSPECTIVE.

In 1996, I entered the world of breast cancer advocacy through my own diagnosis at age 33. As a veterinarian, I had some medical background, but limited information about my diagnosis or how best to navigate the system. At the time, there were few resources focused on hereditary cancer and genetics. After my initial treatment of a unilateral mastectomy with TRAM flap reconstruction, I learned from a magazine article that I fit the criteria for a hereditary syndrome. I was angry that my health care providers hadn’t given me basic information that could have saved me from unnecessary surgeries. But they, too, were in the dark about hereditary breast cancer. Although it cost me another two surgeries, fortunately it didn’t cost me my life. I was grateful to learn about genetic testing and preempt a second diagnosis of cancer. (Pathology from my prophylactic mastectomy found DCIS in my “healthy breast.”) The lack of adequate information and resources motivated me to found FORCE: Facing Our Risk of Cancer Empowered, the only nonprofit organization devoted to helping individuals and families affected by hereditary breast and ovarian cancer.

For more of this story, click on the above light blue link and scroll down to page 17. Or visit: http://www.gene-watch.org/genewatch/GeneWatch_Vol21No3-4.pdf