Basu: Let patients decide who sees personal information
Rekha Basu



October 24, 2007
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For 30 years, a Texas psychiatrist watched her patients lose their jobs, get denied insurance or otherwise suffer because of information she was required to turn over to third parties.

But at least that information was contained in paper files that provided some control over who saw them. Today, the advent of electronic health databases in an era of weakened federal privacy laws can be a toxic combination, warns Dr. Deborah Peel.

Fearful that the unnecessary release of private medical information could become the biggest source of discrimination, she's become a warrior for medical privacy rights. Listening to her, you could get pretty cranked up, too.

Peel's case centers on the 2002 HIPAA (Health Insurance Portability and Accountability Act), adopted to provide continuity of health coverage. The bill was intended, she argues, to provide a right of consent for patients before their medical information could be released into electronic networks. But it was left to the secretary of Health and Human Services to set the standards to ensure that right. She says in HHS hands, the law morphed and now has the opposite effect, because officials caved in to lobbyists for the insurance, pharmaceutical and hospital industries, among others.

So when you are given a HIPAA form to sign by your doctor's office authorizing the release of information, it's not just to people that need it to treat you or pay your bills. It can also go to so-called "data miners," who make money off the information. That, says Peel, has nothing to do with protecting people's health. "You cannot believe the volume of health information (out there)," she said. "We don't even know how many data-mining companies there are."

Once that information is available electronically, companies - including your employer and insurer - could learn about just about anything, from whether you've ever had mental problems or disabilities to whether you use birth-control pills, smoke, or have tested positive for HIV.

Expensive-to-treat or stigmatizing conditions could be used against you, points out Peel, noting, "I've seen how lives get ruined when records get out in a paper system."

She says most patients don't realize they can refuse to sign the HIPAA waiver and it won't affect their treatment.

Peel has founded the bipartisan Coalition for Patient Privacy, which aims to restore people's control over access to their health records, including requiring disclosure by any entity that has them.

The coalition's most immediate priority is amending the Wired for Health Care Quality Act before Congress, which establishes a national electronic health-information technology system, to include language ensuring privacy protections. Peel says many software vendors that create the databases have in their contracts the right to use or sell the data. And the HIPAA law gives companies that offer generic testing the right to use and sell the information for business purposes.

This comes at a time when advances in medical information-gathering could revolutionize our understanding of everything from what causes Lou Gehrig's Disease to whether there's a "gay" gene. Patients with Lou Gehrig's Disease, a fatal neuromuscular disease with no known cause, have lobbied for the ALS Registry, to allow researchers to see what common characteristics they share. That could eventually lead to treatment.

But without privacy protections and in the wrong hands, warns Peel, such information could be used to withhold jobs. Baseball legend Lou Gehrig, who had a familial ALS gene, could potentially have been denied a spot on the team.

As for the new gay gene study, she warns that the same information that could combat the idea that people choose to be gay could also become a tool of discrimination. Even in states that have medical privacy laws such as Iowa, protections can be undermined because patients aren't notified their records are being disclosed and therefore can't intervene to stop it.

The coalition doesn't oppose health databases. It just wants patients to be in charge of who has access to their most personal and potentially prejudicial medical information.

This is a complex issue that, if misunderstood, could send the wrong message on medical progress or the freedom of information. So it's important to know exactly what's being proposed. You could start with Peel's organization at www.patientprivacyrights.org.

REKHA BASU can be reached at rbasu@dmreg.com
http://desmoinesregister.com/apps/pb...8/1035/OPINION