Wednesday, March 05, 2008

Free genetic testing ... buyer beware

Following along the lines of several recent posts, another privacy bulletin: a company called Aperture Health has announced that it's offering free genetic testing as part of its Wellness360 program. The program, called geneVIEW, will "uncover hidden diseases--before they have a chance to cause symptoms," and allow you to "learn about your genetic heritage--and know your true history." These are interesting claims, playing into cloudy public perceptions of what genetic testing actually can and can't do, and reinforcing concepts of genetic determinism in both medical and more existential terms. Aperture doesn't offer any counseling in connection with results, though they do suggest that members print their results and discuss them with their doctor or a genetic counselor. There also doesn't appear to be much information available about what, exactly, is tested for if you sign up. These are all things I could go on about for quite some time.

But the really interesting piece here, and the one that some regulatory body somewhere really ought to be paying attention to, has to do with the business model and the protection of privacy. First, the business model: they make their money from (1) advertisers and (2) employers. Chew on what that might mean for a few minutes, and then come with me on a trip through the website.

The section on geneVIEW claims, "Your genetic code is your private property--we'll help you unlock its secrets, just for you to see." In the Q&A section, they say, "At no time is your information shared, sold, rented, loaned or made available to anyone;" but if you dig around, you'll find that they define this protected "private information"as your name, address, phone number, and SSN. So when they say, "We never share personal information about our members with insurance companies, employers or advertisers," it's a little fuzzy just what this means.

Your health information--including, as far as I can tell, the results of your genetic tests--is another story. To find out this stuff, you have to look at their HIPAA policy--not just the privacy policy. Here, they note that they are not a covered entity under HIPAA, but promise to behave in ways consistent with "applicable" rules. Here's what they say about your medical information:

For Services

We will use medical information about you to provide you with treatment and services. We may share this information with members of our provider network or with others involved in your care such as doctors, nurses, or health care facilities.

For Payment

We may use or disclose your medical information to bill and collect payment from your employer for the services we provide to you. For example, we may need to inform your employer that services provided by a Aperture Health provider have been performed and as such, either you or Aperture Health are eligible for reimbursement by your employer.

Third-Party Research

We may use and disclose medical, diet and exercise information to any third-party. The information will be stripped of all information that could allow for the identity of the member. For example, a member's records will only contain, birth date, general geographic location and related information. The member's name, address, phone number and any identifying information will be removed from all records to which third-party access is provided.

What's the upshot? Well, first, there's a pretty good chance that the fact that you've had a genetic test will be known to your employer and (possibly) to your insurer. As I blogged recently, this is an issue to be concerned about. It also looks to me like they can, and will, sell your genetic information--de-identified, for what that's worth--to researchers (a term that isn't defined anywhere I can see). I've blogged some of these issues, too.

There's also this odd little disclaimer:

You may ask that family members or other individuals not be informed of specific medical information. That request must be made in writing to our Designee. We do not have to agree to your request. If we agree to your request, we must keep the agreement, except in the case of a medical emergency. Either you can stop a restriction at any time. [sic]

Yeah. Free genetic testing? This is one "opportunity" we should decline.

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