Angelina Jolie’s surprise announcement of her prophylactic mastectomy and hysterectomy has shined a spotlight on genetic testing. Like this celebrity, more people with family histories of serious medical conditions are seeking information about their chances of developing a life-threatening illness. As technology and research develop new detection methods, valuable knowledge is becoming available to the general public. But this knowledge can spark emotional chaos.
Andrea Farkas Patenaude, Ph.D., director of psychology research and clinical services with the Center for Cancer Genetics and Prevention at the Dana-Farber Cancer Institute and associate professor of psychology in the department of psychiatry at Harvard Medical School, has been involved in the study of the psychological and social impact of hereditary breast and ovarian cancer for the last two decades.
Although her work has focused on these two types of cancer, Patenaude points out genetic markers for any serious illness prompt some common questions. Firstly, knowing your family has a history of cancer or some other serious medical condition may provoke anxiety over whether to undergo testing. “I see people who are thinking of genetic counseling when they expect some mutation or come from a high risk family. They are nervous about the results,” she says. “For instance, if a woman is diagnosed with a genetic mutation, she has concerns beyond herself. There are treatment implications for a female and also for her relatives and children and how to communicate the news. She often feels bad about passing along the risk to her children.”
Once genetic testing is done – and Patenaude strongly recommends going to a counseling center, rather than seeking independent testing – individuals face choices.
Positive results may lead the patient to choose prophylactic surgery, which then raises the issue of reconstruction and personal consequences. Some individuals may opt not to act at all. “Patients have to realize there is no one right answer. Whatever the results are, an individual has choices to make. People find it helpful to talk to someone that they don’t have to explain the issue,” says Patenaude, reporting that her therapy involves aspects of cognitive behavioral therapy (CBT) and offers ways to think about the news.
Reconstruction adds another layer to the psychological profile. For instance, in the case of prophylactic mastectomy, a woman’s sense of self is a factor. “The husband wants spouse survival, but loss of erogenous zones may be an issue. You have to work through this with your spouse. There is a mourning ritual,” she says. “Also, reconstruction involves multiple surgeries and requires adjustment. You will have some pain and that comes as a shock.”
While immediate family is directly impacted, genetic testing can also raise emotional issues for extended family. “Who do you tell?” Patenaude asks. “There may be relatives who don’t want to hear, but you have to inform them and give them treatment options.”
Another unexpected and somewhat surprising reaction occurs when siblings undergo genetic testing and not all have a gene mutation. “Sometimes, there is disappointment among those who don’t carry the gene,” Patenaude says. “Your sisters might have it, but not you. You feel left out.”
Fortunately, genetic testing and counseling may look quite different in the future, according to Patenaude. “[Your genetics] are part of a constellation of things you pass on to your children. But the future may not be like the past,” she says. “By the time your children grow up, there will be new options.” She indicates that in the coming years psychologists interested in genetics may find many more clinical and research-based career opportunities.
By Phyllis Hanlon