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23andMe – The Hype About Genetic Testing

More and more click-bait articles are popping up regarding genetic testing services like 23andMe (e.g. My Husband and I are Related, With Genetic Testing I Gave My Parents the Gift of Divorce, and 23andMe Reveals Artificial Insemination Nightmare). I focus on 23andMe because it’s one of the major players in this sphere, but it certainly isn’t the only one.

We wanted to take some time to further explore the pros and cons of this genetic testing service. For those of you who might be interested in finding out more about yourself on a molecular level.

For myself, my quick pro/con list ended up looking a little something like this:

PROs

• Gain a better understanding of my ancestral history and family DNA (where do I come from?!)
• The chance to find and connect with relatives in the 23andMe database (hello secret siblings!)
• Detailed reports for genetic health risks and carrier status (is my life long fear of breast cancer really warranted?)
• Unique wellness reports and trait identification
• Access to my raw genetic data (the scientist in me thinks this is so cool!)

CONs:

• There’s a lot of risk. Who owns and gets access to your private information (#bigpharma)? Once you put that information out there it can never be taken back – and this could have much larger implications for you down the line (e.g. turned down for disability, life, or long-term care insurance based on information obtained during this testing)
• What if I learned uncomfortable family history information I couldn’t take back (What if my parents weren’t really my parents? Would that matter to me? What if I exposed an affair? Could I live with that kind of guilt hanging over me?)
• If data breaches can happen at big companies like Target, Bell Canada, Facebook, eBay, etc…. who is to say that 23andMe’s data would be immune?

Arwa Mahdawi with The Guardian wrote a very interesting article, “Why did I risk my privacy with home DNA testing? I blame my Neanderthal heritage”. In it she explores what it means to pay a substantial amount of money to sell your DNA on the internet. She posits that in the end she made the choice out of peer pressure or FOMO (fear of missing out) and in the end curiosity got the better of her.

She reiterates this warning from consumer protection experts across the board: “When it comes to DNA tests, you are signing your life away”

Kristen Brown with Gizmodo explains that “Genetic testing has become home entertainment”. While companies cannot own your DNA (because it’s inside of you) – they can own the right to your sample and the genetic information it contains. She makes an interesting point, “If you don’t like your pictures copyrighted by Facebook, how are you going to feel about your genetic code being bought by one company, then bought by another and all the sudden used for things you never realized”

For me, the risk and uncertainty outweigh the potential rewards. With so many unknowns it doesn’t make sense to give away my personal information, let alone pay money to do it. Of course, a part of me is curious to know what the reports would say … but I think I can live with the mystery for now.

#DNAmysteries