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Dana Nieder was at a loss. Doctors had been trying to figure out what was wrong with her daughter Maya since she was 7 months old. Now 4 1/2, Maya didn’t learn to walk until long after her second birthday and still can say only a few words. After exhausting other possibilities, Nieder decided to have part of Maya’s genome sequenced in a test so new that health insurers have balked at paying for it. “It seemed to be our only chance to find a genetic answer,” says Nieder, a former middle school science teacher from New York City.

Unlocking the secrets of human DNA is one of the most promising avenues of medical research. (Read TIME’s complete series on genetic testing and families.) But along with a host of scientific and ethical issues, genome sequencing raises some tough economic questions at a time when U.S. health care costs are already spiraling. How much is this going to cost, and who’s going to pay?

Whole-genome sequencing (WGS) is already relatively inexpensive — labs can analyze a person’s entire genetic...