Abstract
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To understand more about consumer perceptions and attitudes toward genetic testing, the UnitedHealth Center for Health Reform & Modernization and Harris Interactive surveyed 1506 U.S. adults by phone between January 11 and February 4, 2012 (UnitedHealth, 2012). Before beginning the survey, respondents were given a basic definition of genetic testing and molecular diagnostics.
When asked “How familiar are you with genetic testing?” 70.6% of consumers reported that they were familiar with genetic testing. When asked “How knowledgeable are you about genetic science?” approximately half (49%) reported they were knowledgeable about genetic science. Although a majority were familiar with genetic testing, very few reported having a genetic test themselves (6%) or having a family member who has undergone a genetic test (10%). There was also some uncertainty around genetic testing: Three percent were unsure if they had ever had a genetic test, and 10% were unsure if a family member had ever had one.
The survey also explored consumer attitudes toward genetic testing. More than three quarters agreed that genetic testing allows for more personalized medical decisions (76.9%) and that genetic testing gives doctors the ability to diagnose conditions that can be prevented (77.9%). Respondents also suggested that a number of resources about genetic testing would help them make decisions about genetic testing and the results. Consumers reported that educational materials about the risks and benefits of treatment options, information about conditions, consultations with genetic counselors, lists of appropriate treatment options, and follow-up with a health care provider would all be useful. Several consumer education resources are available through Genetic Alliance, particularly Genes in Life (www.genesinlife.org ) and Disease InfoSearch (www.diseaseinfosearch.org).
Consumers also had positive views of genetic testing in the future. More than three quarters (80.3%) expected that the number of genetic tests available would increase over the next 5 years. Nearly three quarters (73.7%) thought that genetic testing use in the United States would also increase during this time. Despite expecting increased availability and use, very few (4%) thought they would have a genetic test within 5 years, and another 9% were unsure.
The report presents a snapshot of the perspectives and awareness of some consumers. It points out some of the inconsistencies in these perspectives, such as expecting a pervasiveness and availability of testing but not a personal experience of such testing. This is nothing new in medicine, where most individuals feel that something medical will be needed for someone other than themselves. Or so they hope. In any case, the pathway toward increased use of genetic testing is open, and great hurdles exist in reimbursement and coverage in an already strained healthcare economy. As Reed Tuckson, Executive Vice President and Chief of Medical Affairs, UnitedHealth Group, said at the recent Genetic Testing Summit convened by Genetic Alliance, showing the "cost curve" from the Office of Budget and Management (OMB, 2009), “the curve as frightening, and there is no one printing money. We can't pay more for healthcare.” He implored us to work together to find ways that not only would help genetic testing lead to better health but also would reduce costs on the way. Additive costs will not fly in this environment. For a complete copy of the UnitedHealth Center for Health Reform & Modernization report, please visit www.unitedhealthgroup.com/hrm/UNH_WorkingPaper7.pdf.