IF YOU look for medical advice on the Internet, you may be sharing your intimate secrets with companies you’ve never heard of. Many websites that dispense medical advice pass information on users to other companies, according to a report released last week.
“I think it’s very serious,” says Jason Catlett, president of Junkbusters, a company in Green Brook, New Jersey, that campaigns against abuses of junk mail. “We’ve moved our lives onto the Internet and we’re discovering it’s an unsafe and un-private place.”
About 30 million people in the US alone use medical information websites. To find out how they gather information, the California HealthCare Foundation, a non-profit group based in Oakland, used sophisticated software tools to monitor the flow of information between 21 health-care websites and the foundation’s own computers.
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Most of the sites use “cookies” to track users and compile information. Sometimes this information is sent to third parties without the user’s knowledge. Several sites invite users to register, for which they have to give their name and e-mail address, before they can take part in online health surveys.
Users who click on a survey are in fact sometimes passed to another company’s website, and their personal registration information goes with them. These sites “have access to huge amounts of information”, says Zoe Hudson at Georgetown University Medical Center’s Health Privacy Project in Washington DC, one of the authors of the report.
“The report actually makes some good points,” says Rebecca Farwell of OnHealth, a Seattle company that runs a medical information site. She says her own company will rewrite its disclosure policy to make it clear what happens to information collected from users.
But many groups are calling for legislation to regulate what companies can and cannot do with personal information they collect. “We think that self-regulation doesn’t work,” says Andrew Shen, a policy analyst for the Electronic Privacy Information Center, a pressure group in Washington DC.
At least four bills are pending in Congress that would regulate the collection and use of information online.
