DNA testing and individual people

If you missed it, you should check out the article that appeared in the New York Times written by Amy Harmon. She titled it: My Genome, Myself: Seeking Clues in DNA. Amy writes in a put-it-down-on-as-it-comes-out-of-your-head style not unlike mine, so of course I enjoyed reading it.  

Amy was given the chance--and she accepted it--to be one of the early participants in the $1000 sales of whole genome analysis being offered online by several companies. In my usual policy of not naming specific companies, I'll let you check her article or use a search engine to find one.

Anyway, once her test was in process, she began to wonder how the results would affect her life:

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?

Using the resources provided her by the testing company, she began to explore her DNA trying to find answers to her "persistent questions". She soon found, as does everyone who looks at the human genome map, or any result from a testing company, that each question generates more questions. Sometimes, you get answers that include predictions:

I was 23 percent less likely to get Type 2 diabetes than most people. And my chance of being paralyzed by multiple sclerosis, almost nil. I was three times more likely than the average person to get Crohn's disease , but my odds were still less than one in a hundred.

Are probabilities divided or multiplied? If you do all the things that would lower your risk of condition X, condition Y, condition Z will you live 110% of your life expectancy?

She dove into the reams of data, doing what we all might do--ignoring the disclaimers along the way:

Compelled to know, I breezed through the warning screens on the site. There would be no definitive information, I read, and new discoveries might reverse whatever I was told. Even if I learned that my risk for developing a disease was high, there might well be nothing to do about it, and, besides, I should not regard this as a medical diagnosis. [I read on:] If, after considering these points, you still wish to view your results, . . . click here. I clicked.

What would you do if you sent in your DNA, paid the $1000, and then tried to interpret the results?

As I've said many times: before you decide to have genetic testing done, consider what you will do with the results. Until you are ready for any possibility--however good or bad or uncertain--save your money.

Marie Godfrey, PhD 

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