FARGO Medical science has developed genetic tests for 2,000 diseases that are available for clinical use.

Some, such as prenatal screens to test for Down syndrome and other congenital disorders, have been in use for years.

But in many cases, experts said, limited scientific information is available to evaluate tests, and medical providers and payers are struggling with how to navigate an expanding field of medicine.

Health insurers often are the gatekeepers in deciding whether to pay for genetic tests. Early diagnosis and treatment can improve patients outcomes and be more cost-effective, but payers want scientific guidance.

Theyre struggling with this too, is my belief, said Dr. Claire Neely, medical director of the Institute for Clinical Systems Improvement, a Minnesota group that advises member health systems and insurers.

They want to do the right thing for their patients, she said.

Sanford Healths recently announced initiative to bring genetic medicine and counseling into the primary care setting, in combination with research and education, should generate useful information, Neely said.

I would call it increasing genetic literacy in primary care, she said. I think that is an important piece.

Experts, including those with the Centers for Disease Control and Prevention, say valid and useful tests are available for certain hereditary breast and ovarian cancer, as well as a hereditary form of colon cancer, two well-established examples.

But those tests are not widely used, partly because of limited research on how to get useful tests in the clinic, and others have only limited scientific information to evaluate their effectiveness, a CDC report concluded.

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Health insurers struggle with whether to pay for genetic tests

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