Jeff the Great Ponders His DNA

For Christmas, I got my wife a personal genetic test for health and ancestry from a company called 23andMe. Essentially, a DNA test. After spitting in a tube and mailing it in, the company tells you all sorts of cool things like where your recent ancestors come from, where your deep genealogical roots are in the ancient world, what the chances are that you'll pass on more than 40 inherited conditions, and your chances at developing more than 250 different diseases. You also have the opportunity to contribute to important research around things like genetic diseases or even the discovery of what gene causes back hair. All that for the price of $99.

Pretty amazing to think about how far technology has come to deliver personal genetic analysis for only a hundred bucks. While this service offered by 23andMe is not a full gene sequencing, I'd like to offer an example of how far technology as come in such a short period of time. In 2005, a full genome sequencing for a single person cost approximately $17.5 million dollars. Just 7 years later in 2012, the cost had plummeted to just $7,500 (source: genome.gov). Similarly, the less complex genetic analysis at 23andMe has dropped in price. Starting out at $999 in 2007, the price dropped to to $299 and finally $99 in December of 2012.

So the price is right and I am ready to jump. Except, I have all these long term implication questions in my head. Not about how I'll handle learning about potentially scary health things or surprising ancestry, I'm fine with all that. I am worried about the privacy and legal implications.

If I become a customer of 23andMe, will I be putting my life, freedom, and/or privacy at risk in the future? Could a court subpoena my genetic information from 23andMe and use it against me in a trial? Could a health insurance company ever get their hands on my personally identifiable information and use it to effect my rates? When required to disclose health information, would I be legally and morally obligated to disclose information from the 23andMe results? Could the optionally stored saliva sample, with personally identifiable information, be handed over to anyone else in the future?

My mind is running with all sorts of crazy thoughts! Increased insurance premiums, conviction of a crime, etc, etc! Could I be denied the opportunity to be President of the United States in the future because my health isn't up to par, or because my recent ancestors were discovered to be from outside the country? Crazy thoughts, I know....but who knows what the future holds, right?

So, I'd love to hear your thoughts or if you have participated in 23andMe, your experience. If you are a legal professional, I am especially interested in your opinion.

1 comment:

Matt Wallington said...

I think you finally talked me into doing this myself.

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