My Genome, Myself: Seeking Clues in DNA

The exploration of the human genome has long been relegated to elite scientists in research laboratories. But that is about to change. An infant industry is capitalizing on the plunging cost of genetic testing technology to offer any individual unprecedented — and unmediated — entree to their own DNA.
For as little as $1,000 and a saliva sample, customers will be able to learn what is known so far about how the billions of bits in their biological code shape who they are. Three companies have already announced plans to market such services, one yesterday.
Offered the chance to be among the early testers, I agreed, but not without reservations. What if I learned I was likely to die young? Or that I might have passed on a rogue gene to my daughter? And more pragmatically, what if an insurance company or an employer used such information against me in the future?
But three weeks later, I was already somewhat addicted to the daily communion with my genes. (Recurring note to self: was this addiction genetic?)
For example, my hands hurt the other day. So naturally, I checked my DNA.
Was this the first sign that I had inherited the arthritis that gnarled my paternal grandmother’s hard-working fingers? Logging onto my account at 23andMe, the start-up company that is now my genetic custodian, I typed my search into the “Genome Explorer” and hit return. I was, in essence, Googling my own DNA.
{Amy Harmon rightfully worries that insurers and employers will use her genetic data, but she gets her DNA tested anyway. It is irresponsible for the NY Times to put this story on the front page and not report on the fact that today Americans have NO control over access to their personal health information—including DNA testing.  HIPAA authorizes over 4 million health-related businesses and government agencies to snoop in our electronic health records and sell them without notice or consent. And Congress has yet to restore our long-standing rights to privacy and to control access to our health information. Just last week, Senators Kennedy, Enzi, Clinton, Hatch, and Obama tried to rush a bill through the Senate to build a national electronic health system where consumers have no control over personal health information. They say privacy can be added later. But re-designing technology to guarantee that consumers give informed consent before data is used is nearly impossible and prohibitively expensive.  Privacy simply has to be built into electronic health systems up front. It is foolish to get tested when there is literally no way to stop your genetic information from being used by insurers and employers. Why endanger your child’s future? Most Americans will not participate in a health system that allows their sensitive health information to be used against them. Navigenics, DeCODE Genetics, and 23andMe can all legally sell our genetic data. No laws or rights prevent corporate use of the most sensitive information on Earth: our DNA and genomes.~Dr. Deborah Peel, Patient Privacy Rights}

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