Spending on genetic tests grows

Report calls for more genetics education and counselors

National spending on genetic tests has reached an estimated $5 billion annually and could top $25 billion within a decade, a major insurer predicts.

These figures, from a report by the research arm of United Health Group, Inc., are based on company data and Medicare and Medicaid fee-for-service spending [United Health Group, 2012]. UnitedHealth released the report during a March 12 Washington, D.C. meeting about the state of genetic testing and potential improvements in their use and regulation. Genetic Alliance hosted the meeting, and Biotechnology Industry Organization, Scientia Advisors, and the Pennsylvania-based health system Geisinger shared sponsorship.

Both the meeting and report, titled “Personalized Medicine: Trends and Prospects for the New Science of Genetic Testing and Molecular Diagnostics,” come in response to pay or concerns about the cost of genetic tests and related issues including criteria for their appropriate use, evidence of their effectiveness, reimbursement, and regulation.

The report estimates that United Health members in private plans, Medicare, and Medicaid spent $483 million on genetic tests in 2010. Forty-four percent of that figure was related to inherited disorders and “other conditions,” 40% to infectious diseases, and 16% to cancer.

Average annual spending on genetic tests for United Health members increased by about 14% from 2008 to 2010, overwhelmingly driven by higher utilization, but also by test intensity and complexity. Much of the increased use pertained to women undergoing the wide array of tests available for breast and ovarian cancers and prenatal genetic testing, according to the report.

Physician Concerns

Data from January and February 2012 surveys of 2,760 physicians from various specialties showed they are concerned about the cost of genetic tests. Fifty-nine percent are very worried about what the tests cost patients, while a much smaller proportion, 21%, are worried about being reimbursed for the test. Slightly more than half, 56%, believe that the net effect of new genetic tests will be to increase healthcare spending, while a much smaller proportion, 19%, thinks they will reduce costs.

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The report estimates that UnitedHealth members in private plans, Medicare, and Medicaid spent $483 million on genetic tests in 2010.

Most physicians aren't comfortable interpreting the results of prenatal, newborn, and oncology tests, the report says. Overall, only 25% are comfortable with prenatal and newborn tests and 28% with cancer assays. A greater proportion of specialists in hematology, oncology, rheumatology, and neurology reported comfort with test interpretations than did primary care physicians. For newborn screening tests, 43% of the specialists reported comfort with interpretation, versus 29% of the primary care practitioners. For oncology tests, those figures were 49% versus 22%.

Only 400 out of an estimated 1,000 to 1,300 molecular tests have any evidence-based guidelines, leading 40% of surveyed physicians to express concern about the lack of evidence regarding genetic test effectiveness and utility.

The paper urges professional societies and other independent research entities to consider appropriate uses of genetic tests, and suggests establishing continuous processes for guideline review and frequent updates to reflect rapid developments in testing technology and genetics research. It also recommends genetics and bioinformatics training for physicians, and giving them access to both support materials developed by genetics specialty societies and use of shared decision-making guides for discussions with patients.

Needed: More Genetic Counselors

In particular, the report points to genetic counselors as professionals who can help patients make informed decisions regarding genetic testing and their results. Some payors already contract with genetic counselors and encourage their inclusion in integrated care delivery teams, the report adds. But, according to the report, today there are only about 3,000 board-certified genetic counselor and 1,400 board-certified geneticists.

“We need more genetic counselors. They are the most important people in this conversation.”

Reed Tuckson, MD

Reed Tuckson, MD, Executive Vice President and Chief of Medical Affairs at United Health Group, and formerly a Chair of the disbanded Department of Health and Human Services Secretary's Advisory Committee on Genetics, Health, and Society, emphasized genetic counselors' crucial role to meeting participants. “We need more genetic counselors. They are the most important people in this conversation,” he said.