A recent announcement by HHS Secretary Mike Leavitt that the department is working to combine healthcare information technology with the rapidly expanding field of genetics is likely to get a poor reception from healthcare recipients.
Leavitt says the goal is to standardize the use and storage of genetic data so it can become part of the national electronic health-record system under development at HHS.
But one bioethics expert says the move is doomed to fail because of patient resistance. Such a combined health and genetics patient record could lead to insurers limiting patient access to healthcare—or patients being charged more by insurers based on diseases or conditions to which they are genetically predisposed—and people aren't going to accept that, says Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania.
The chance of replacing today's largely paper-based records system with a system combining genetics and IT, given today's legal environment and a payment system dominated by private-sector health insurance companies, "is somewhere between hopeless and none,'' Caplan says. While the goal of standardizing the technology is laudable, patients will not stand for a system that allows insurers to charge rates based on a genetic forecast of future health, he says.
Leavitt says his goal, however, is to increase efficiency and coordination in the booming field. "There are people storing genomic profiles all over the country without any standards,'' Leavitt says. "When we get down to our next batch of standards, I would consider this to be one of them.''
With that goal in mind, Leavitt says he has created within HHS a multiagency "personalized healthcare team'' to explore ways to "build an interface'' linking the fields of IT and healthcare delivery with the rapidly expanding areas of genetics testing, research and product development. His remarks came at a mid-September meeting of the American Health Information Community, the federal IT advisory panel chaired by Leavitt.
Specifics on the structure of the group have yet to be worked out. David Brailer—a physician and the former head of the Office of the National Coordinator for Healthcare Information Technology at HHS—says the status of the new genetics-IT team is still under discussion.
There will be a work group, he says, which would make it the seventh one created under AHIC. But staffing has to be resolved, Brailer says, speaking on the matter for HHS. Typically, AHIC work groups are staffed by ONCHIT employees, but HHS will probably call on other government agencies with expertise in genetics to staff the group, he said.
One of the new AHIC work groups, which first met Aug. 21, was established to advise Leavitt on issues of confidentiality, privacy and security of electronic healthcare information, and will take up the issue of privacy policy recommendations regarding genetic testing, according to Brailer.
