A national poll found that 34% of respondents would not seek genetic testing to predict their likelihood of developing a hereditary cancer, even if the cost of the testing was not an issue. Respondents cited concerns about employment and insurability as their primary reason, even though current laws prohibit such discrimination.
The poll also showed only 35% of respondents would be extremely or very likely to seek aggressive prophylactic or preventive treatment, such as a mastectomy, if they had a family history of cancer and genetic testing indicated a genetic predisposition to cancer. The annual poll was conducted by the University of Utah’s Huntsman Cancer Institute (HCI) in Salt Lake City.
“I see patients every week who could have taken steps to reduce their risk if they’d known they’d had a predisposition for a certain type of cancer. The best treatment for cancer is prevention, of which genetic testing plays an integral role,” said Saundra Buys, MD, codirector of the Family Cancer Assessment Clinic and medical director of the High Risk Cancer Research at HCI, and professor of medicine at the University of Utah, also in Salt Lake City. “In addition to educating the public about the important role genetic testing plays in both prevention and treatment of cancer, we must also work to eliminate perceived false barriers to testing, such as concerns about insurability and employment.”
Nearly 40% of those who said they wouldn’t seek testing reported being somewhat or extremely concerned that the results would impact opportunities for employment, whereas 69% of that same group reported being somewhat or extremely concerned that the results would have an adverse impact on their ability to get insurance.
Inherited mutations play a major role in the development of approximately 5% of all cancers. Genetic mutations associated with more than 50 hereditary cancer syndromes have been identified.
Buys said that the survey demonstrates that, even with increased media attention to genetic testing in recent months, more work is needed to educate the public about the type of information genetic testing provides and who should seek it. She said family and personal health history are the most important factors in determining whether a person should consider genetic testing.
She warned, however, that genetic testing is only as good as the genetic counseling that accompanies it. “There are many genetic tests being ordered in physician offices around the country without the benefit of genetic counseling. The results of these tests are complex, and without appropriate counseling, can cause confusion and unneeded anxiety for patients,” said Buys.