National poll shows public divided on genetic testing to predict cancer risk

Genetic testing to predict the likelihood of developing a hereditary cancer could help save millions of lives each year. This year's survey shows significant work is still needed to educate the public about the important role genetic testing plays in both prevention and treatment of cancer. Credit: University of Utah

A national poll from the University of Utah's Huntsman Cancer Institute shows 34 percent 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.

Concerns about employment and insurability were cited as the primary reason, even though current laws prohibit such discrimination.

The poll also shows only 35 percent of would be extremely or very likely to seek aggressive prophylactic or preventive treatment, such as a mastectomy, if they had a family history of and indicated a genetic pre-disposition to cancer.

"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, M.D., co-director of the Family Cancer Assessment Clinic and medical director of the High Risk Cancer Research at Huntsman Cancer Institute (HCI), and professor of medicine at the University of Utah. "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 percent of those who said they wouldn't seek testing reported being somewhat or extremely concerned that the results would impact opportunities for employment, while 69 percent 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 percent of all cancers. Genetic mutations associated with more than 50 hereditary cancer syndromes – including those discovered at the University of Utah for melanoma, colon and breast cancer – have been identified.

Buys says 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 says family and personal health history are the most important factors in determining whether a person should consider genetic testing.

She warns, however, that genetic testing is only as good as the 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.

Other findings from the poll:

Following recommended screenings: 63 percent of respondents reported being extremely or very likely to follow all recommended screenings if they knew there was a history of cancer in their family.

Testing to help identify best course of treatment: 85 percent of respondents stated that if diagnosed with cancer they would be willing to undergo genetic testing if it could help determine the most effective course of treatment.

Sharing of genetic information: Of the 85 percent of respondents who said they would seek testing to determine best course of treatment, 72 percent reported their willingness to provide scientists with their for research purposes. Of that group, 64 percent reported they would be most comfortable sharing their genetic information with a medical center associated with a university or dedicated cancer hospital.

Overall rates of genetic testing: Only 8 percent of respondents reported having ever had a genetic test.

The online poll was conducted in October 2013 for the University of Utah's Huntsman Cancer Institute by Harris Interactive who surveyed 1,202 men and women nationwide between the ages of 25-70 with either commercial or government insurance.

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LynchCancers
not rated yet Feb 06, 2014
The poll, completed by Harris , polled 1202 persons who may or may not have had a family history of cancer. What it did show, according to the article, was 66% of all persons polled would comply with genetic testing for a predisposition to a herediitary cancer gene. It did indicate a distrust of insurance companies and fear of losing employment, which is a valid fear in the current climate where people did lose insurance prior to the registration for insurance exchanges, which probably affected it dramatically. And it is a valid fear in a climate where there is high unemployment, where individuals in the private sector often do not have sick leave and where there is massive competition for available jobs. It is difficult for those who work in professions such as government or the medical profession (who have unions) to realize the fear of those who work for small businesses and private industry, who have far few benefits, job security and job protections.

Actually, the numbers are terrific for individuals with little or no information to base their decision upon in respect to diagnosis and treatment of hereditary cancer and for it to be advertised in this manner is counterproductive for public awareness purposes. The desire is to get people to learn their family history and test.

In fact, the numbers are far better than the reality of those who submit to genetic testing within the major cancer centers. Kaiser Permanente reported only 33% submit to genetic testing. Ohio State University showed low numbers, so what people say they will do, and actually do when the need arises, are two entirely different things which depend upon the situation, the need, the barriers from the home (economic, time, physical ability, etc.), the ability of the health organization to make appropriate accomodation for the patient, caring awareness and education of the institution and the trust and bond between the patient and the person giving the information.

What is bothersome is the attitude expressed in the article toward private physicians who began in 2009 to diagnose patients on a large scale and who have saved tens of thousands of lives by diagnosing almost 40% of all those diagnosed. The community is where individuals get diagnosed, not the large cancer centers. Our physicians are doing a tremendous job, with some individual physicians diagnosing more individuals than diagnosed in entire cancer centers, and major health networks, in a year. This indicates there is a serious lack of knowledge of some within the genetic community who don't realize what is occurring within the community.

Disconcerting is only part poll results are being revealed. What it does show, however, is public awareness perhaps IS working...what we do know is through public awareness, diagnoses have increased dramatically...finally about "education," we've been saying all along, the genetic community needs to step out of its cloistered existence and educate physicians. It is their expertise...they need to get away from their desks, educate the community and work in gastrointestinal clinics and gynecological clinics, performing triage at the time the cancer is detected, therefore, not requiring patients to wait weeks for testing, not have to walk sometimes as far as half a mile, when seriously ill for a "counseling appointment," (as well as drive there and find parking) and then have to do it again when obtaining the diagnosis. This is a very serious barrier to diagnosis and perhaps one of the successes of the private physicians, when they assess the family history and test the person all at one time.

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