Genetic testing--Free??

The opera was great last night, Handel's Rodelinda. I continue to thank a friend in Italy for introducing me to the wonders of opera; I always thought it was just fancy singing.

Anyway, back to words. Yesterday, I started with a quote from Elisa Doolittle in My Fair Lady because I had been searching for information on the company offering free genetic testing and got lost in words. The three words I focused on were geneVIEW, wellness360, and flexSCAN. As far as I can tell--I'm waiting for more answers from the company itself--geneVIEW is the program for genetic testing offered by the company flexSCAN as part of its wellness360 program.

My first concern with the free offer was what the company was offering and what privacy guarantees they promised. The privacy issue was discussed in yesterday's blog.

My second concern was "what are they getting out of this that they can offer the genetic testing for free?" Other companies are charging close to $1000. So, I checked the FAQs on the geneVIEW genetic testing website. Here are some of the questions and the answers they give:

 

How can you provide genetic testing free of charge?

We are able to provide free genetic testing the same way all our services are free. Just like every Internet web site, revenue is derived from advertisers and sponsors. Our unique business model is to "share" a portion of the revenue with our members. In doing so, the costs of our services and the cash payments to our members is subsidized by our advertisers.

Is my information going to be shared or sold to anyone?

At no time is your information shared, sold, rented, loaned or made available to anyone. We follow the Health Insurance Portability and Accountability ACT (HIPAA) guidelines and California's Civil Code Section 56 of the Confidentialty of Medical Information Act (COMIA) regarding the safe keeping of your medical, genetic, lifestyle and wellness information.

Your password-protected wellness360 account uses sophisticated encryption technology to ensure your privacy.

What is wellness360?

wellness360 is our Internet environment providing its members access to a robust suite of services including:

- Health Risk Assessment
- Personal Health Record
- Diet and Fitness Tools
- Medical Information Search Engine
- Personal Health Radar
- Digital Storage of Paper Medical Records
- Emergency Medical Record

wellness360 services are private, free and available 24 hours a day seven days a week. As our slogan says, wellness360...It Pays to be Healthy.®

Why do advertisers care about wellness 360 if you don't share my data?

First, remember that a no time is your private information (e.g. name, address, medical conditions, genetic test results, etc.) ever shared with any third party, including advertisers. Our technology, however, does two things:
FIRST: it allows us to modify the wellness360 experience to match your specific needs. In doing so, we can automatically provide you information every time you visit wellness360 that is specific to you.

SECOND: Just as we can modify your experience at wellness360 based on the information you store with us, we can also filter the advertisements presented to you that are determined by thousands of characteristics (for example: height, weight, medications, etc.) As such, advertisers wish to lower their cost of delivering messages to their target audiences. wellness360 provides advertisers the ability to have their messages only seen by their specific target audience. In doing so, no messages are wasted and the economic savings are converted into cash benefits to our members.

So, do you trust these guys enough to sign up? Each time you approach a question you're not sure you want to answer--the first one I hit was "Primary physician's name"--think about it. I stopped there. I'm sure I would have been stopped by the 40 questions on my health history, asked (they say) to provide a clearer picture of who I am healthwise, so they can better interpret my genetic data.

Recently, I reluctantly agreed to let an insurance salesman in my home. I checked out the company on the Internet and asked friendsabout it and they seemed legit. I'm concerned that if I suddenly die, my children will not be able to make my mortgage payments until they can arrange to sell the house. So, I agreed to a small policy for a small monthly fee. The salesperson said "no medical exam" and then proceeded to ask an almost embarrassing series of health and habit questions. I paid my first premium and sat back and waited for more.

Some time later, a woman called, representing the insurance firm, and asked about a medication recently prescribed for me. During the previous questioning, I had not named this medication in my list of meds I am taking. So, where did this information come from? Some sort of medical information service available to insurance companies. Where's HIPAA (medical information privacy act) I wondered.

A few mornings ago, I was awakened by someone wanting to schedule me for a blood draw. Forgetting all about insurance--that was two months ago anyway and the name of the group requesting the blood draw was not at all familiar to me--I refused, but acquired the name of the lab and the person who called me. Calling her back later, I finally traced the request to this insurance agent who had interviewed me in my home. I refused the blood test and sent an e-mail to his company for explanation of what's going on. They wrote back saying my questions deserved personal attention and gave me a phone number to call.

A friend's life was nearly destroyed by conflicts with an insurance company, so I'm often worried about the prospect of committing insurance fraud. If I chose to get a free genetic test, what would this open me up to? The privacy policy seems quite clean, and they promise to destroy my samples once they're analyzed, but who's going to stop them if they don't? And, once I have the genetic information that says I have an increased likelihood of fatal disease X--in comparison with the general population--will I be committing insurance fraud if I don't disclose that to any insurance company that asks?

If any of these questions resonate with you, please add your own--or tell me I'm paranoid. I'll probably agree with you.

Marie Godfrey, PhD

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