I signed up for 23andMe a few years ago for professional reasons. This was before November 2013 when the FDA told 23andMe to stop providing health results. As a health care marketer, I admired how the company’s whimsical pink and green infographics made genetics both appealing and understandable.
When I mentioned to friends that I had signed up, many said that they wouldn’t want to know if there was some disease lurking in their genetic code. I’ll admit that a chill went through my body as I thought, “What if I find out something really bad?” Luckily, my repressed WASP upbringing allowed me to shelve any looming unpleasantries in the back of my mind.
When the 23andMe test results came, nothing really bad popped up. My results weren’t that earth shattering and made sense based on my family history. I was higher risk for Venous Thromboembolism (VTE) and Atrial Fibrillation.
At the time, I largely ignored the ancestral results. They were pretty lame, telling me what years of sunburnt skin told me: I was 99.9% Caucasian. As for country of origin, I knew that I was a U.K. mutt with a small German streak.
Several years went by, and 23andMe continued to email me with updates. One day in April, I happened to click on one all the way through to the ancestry data.
And that was when I had my Madeleine Albright moment: 19% ASHKENAZI.
When my mother was later tested, it revealed that she was 49% Ashkenazi, totally unbeknownst to her. We hypothesize that my maternal grandfather, Irving Crook, was probably Jewish. He came to America from England when he was 6 months old. But that didn’t mean he was of English descent. England was most likely just a stopover for his Eastern European parents escaping persecution. We will probably never really know, and most likely Irving didn’t know either.
How does this change my life? Not much. I still sing in the church choir and help organize our annual Fish & Chips dinner. However, the bigger question is what impact did my health results have on my behavior? The biggest change is that I now get up during long plane rides to help prevent blood clots, something everybody should do anyway.
I recognize that for many people, the 23andMe health results can have major consequences. Had I gotten more devastating news, it could have sent me down a rabbit hole of unnecessary, expensive and potentially dangerous medical testing. As Atul Gawande says in his recent Yorker article, “Overkill”, “Millions of Americans get tests, drugs, and operations that won’t make them better, may cause harm, and cost billions.” I also realize that not everybody is equipped to deal with bad news like Angela Jolie, who upon learning she had the BRCA gene, chose prophylactic surgery.
But despite these caveats, I think the author of “The Patient Will See You Now”, Eric Topol is right, the personal data genie is out of the bottle. In the opening pages of his book, he makes the following bold statement:
“We are embarking on a time when each individual will have all their own medical data and the computing power to process it in the context of their own world. There will be comprehensive medical information about a person that is eminently accessible, analyzable and transferable. This will set up a tectonic power shift, putting the individual at center stage.”
It is true that our health care system with its practice of defensive medicine and misaligned economic incentives has the power to distort good data into bad unintended consequences. This fear drives the cry for a more measured approach to personal health data transparency. We end up like the little Dutch boy with his finger in the dike, trying to hold back the flood of health care information.
However, the time and effort is better spent helping this free flow of personal data transform our flawed health care system into a more patient oriented system. That’s why education and good health care information are even more critical going forward. Don’t withhold information, teach people how to deal with it.