New research suggests that patients often take clues about a family's hereditary cancer risk to the grave because genetic counseling typically isn't part of end-of-life discussions or care.
Researchers at Virginia Commonwealth University Massey Cancer Center interviewed 43 dying cancer patients and determined that nine of them, or about 21 percent, were good candidates for genetic counseling based on various risk factors that suggested hereditary colon, breast, lung, pancreatic or ovarian cancer. Although the counseling most likely would not have made a difference in their treatment, the knowledge of hereditary risk would be useful to surviving family members, the researchers noted.
None of the eligible patients, however, had received counseling to discuss their genetic legacy, according to the study, which was published in The Journal of Genetic Counseling. Most of the patients weren't well informed about genetic counseling, and many hadn't heard of DNA banking, which allows storage of blood and tissue samples for future testing after a patient has died.
It's thought that about 5 to 10 percent of cancers have a strong hereditary component, said the study's lead author, John M. Quillin, an assistant professor in the department of human and molecular genetics.
"Genetic testing is typically done on a blood sample," Dr. Quillin said. "We lose opportunities to get that blood sample after patients die, which has implications for family members. It's for folks who are now wondering, 'Was there something in my mother's DNA that has implications for me?' "
Dr. Quillin notes that most people who have cancer don't need genetic testing. But hereditary cancer is suspected when someone is diagnosed with cancer at a younger age, such as premenopausal breast cancer or colon cancer before age 50. A person who has been diagnosed with more than one type of cancer or who has two or three relatives with a similar cancer also may be a candidate for genetic testing.
Dr. Quillin notes that a conversation about genetic testing can leave patients feeling empowered and pleased that their illness may lead to better screening or treatments for their loved ones.
"From a medical standpoint, there's a window of opportunity for getting information for surviving relatives," he said. "But there could be other benefits. There have been studies that suggest folks near the end of life feel that they want to leave a good legacy for their family members, so if finding their genetic legacy helps their family members out, they may be interested in pursuing this. There are some psychosocial and family benefits to talking about this."
Genetic testing typically is paid for by insurance companies only when it can directly influence a patient's treatment. DNA banking of blood and tissue samples usually is not covered. The cost of DNA banking ranges from $50 to $350, according to the National Society of Genetic Counselors.
The society's Web site has more information about genetic counseling. Andthe GeneTests.org Web site, financed by the National Institutes of Health, has a list of DNA banking labs as part of its laboratory directory.
http://well.blogs.nytimes.com/2010/10/28/taking-genetic-history-to-the-grave/
