Miller Mobley / Redux for TIME
Dana Nieder turned to friends and strangers to help pay for her daughter Maya's exome sequencing
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 didnt 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 Mayas 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 TIMEs 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 whos going to pay?
The final chapter in a five-part series exploring the promise and pitfalls of sequencing childrens genomes
Whole-genome sequencing (WGS) is already relatively inexpensive labs can analyze a persons entire genetic code for under $10,000 and the cost is dropping fast. But for some patients, this initial DNA report is the beginning, not the end, of their medical odyssey. And whether those journeys will increase the nations health costs isnt clear.
In an ideal scenario, genetic analysis could save money by catching diseases early, offering targeted treatments and underscoring the most effective preventive measures. In the worst case, it could deluge an already swamped health care system, as patients with ambiguous results begin to seek frequent screenings and potentially unnecessary procedures for diseases they might never develop. Princeton health care economist Uwe Reinhardt sees a future that skews toward the latter: If someone held a gun to my head, I would have to say it will cost a lot more and it will create an enormous amount of anxiety. A certain amount of ignorance is really bliss.
More than half of the 1,254 doctors surveyed this year by UnitedHealthcare said they think new genetic tests will increase overall health care spending; just 1 in 5 think the tests will lower costs. One of the countrys largest insurers, UnitedHealthcare estimates the U.S. spent more than $5 billion on genetic testing in 2010. By 2021, the company says, total spending on genetic testing could rise to $25 billion, a figure based in part on its prediction that WGS will become widely available soon.
For now, scanning a patients entire genome is cutting-edge technology, and health insurers rarely cover it. The reason, industry officials say, isnt the cost; they note that insurers already cover hundreds of expensive tests targeting specific genes. Rather, the insurers say theyre cautious because the technology is new and unproved; they also share the CDCs concern that geneticists dont yet know how to interpret all the results.
Slight differences, or variants, in peoples genetic code are what make us unique. Some of these differences are known to increase the risk of disease; others dont seem to matter. Everyone has in the neighborhood of 3 million variants, says Dr. Joanne Armstrong, senior medical director of Aetna. Of those variants, theres a significant chunk where were not sure what they mean. So its kind of noise vs. signal.
Continue reading here:
Cheaper Genetic Testing Could Cost Us a Fortune