I started at the Nutrition Business Journal in July and almost five months later I have to come to think of myself as the Boy Outside the Bubble. I came from newspapers so my skeptic streak runs deep. If my son says he left his math book at school, I go through all three pockets in his backpack.
And then I check under his bed.
So when my coworkers at NewHope started ordering genomic home test kits from 23andMe, I kept the $99 in my checking account, and on Monday, when we saw the FDA’s warning letter telling the company to stop marketing the kits, I felt a bit of validation.
My colleague, Marc Brush has been following 23andMe closely and I know he’s way out in front of me on personalized medicine. Still when, he wrote a blog responding to the FDA/23andMe developments, and asked “Is genetic information truly empowering, or rather a heaping dose of uncertainty and fear?” I told him “I vote for ‘heaping dose of uncertainty and fear.’”
I’ve thought for months that chances of finding an indication for something directly actionable are negligible. Angeline Jolie is the extreme outlier. Almost everything else you might find, from cardiac to Alzheimer’s, would point you to lifestyle changes you should already be making - eating right, exercising, controlling stress, staying engaged socially and mentally. Something like 23andMe might be useful as a nudge in the right direction for some but it’s not like the information isn’t out there. Countless people only discover cardio workouts after their first heart attack and many of these same people saw their own parents die from the disease. What I’d call freight-train-sized nudges are ignored en masse. Do probability numbers on a genomic report have a magical power your family history and common knowledge lack?
What happens when somebody gets their report and then schedules an appointment with Dr. Google? Because Dr. Google may be one of few doctors that won’t tell patients to drag the 23andMe email to TRASH and forget about it. With nothing more than a keyboard consultation, the potential for doing something stupid almost certainly rises, even if “something stupid” is just spending money people don’t need to spend.
If you have a genetic propensity for a disease that doesn’t mean you are going to get it. Beyond the “You should already be doing this!” lifestyle changes, do you really start treating a disease you might get before it shows up? What if the treatment, something as simple as upping your Vitamin E, raises your risk related to some other genetic expression that didn’t show up? Even if it did show up, are the genomic indicators cross referenced? What if there is no known treatment and all you get is a few decades of worrying and limiting your life?
I shattered my collarbone into four pieces in 1998 and when I looked at the X-ray I thought “Somebody needs to go in there and staple that back together.” The orthopedic surgeon told me “just wait.” I waited and the bones fused back together on their own, fully functional, without the risk of infection or surgical mishap, without a set of metal pins in my shoulder. A genomic report is unknowably more complicated than an X-ray.
Even the scientists who study genomics can’t read every line. They can read some but there are few footnotes that tie what happens in Chapter 1,012,003 to major plot points in Chapter 437,333. Maybe 23andMe goes through with a highlighter but what if they are they just highlighting the scary parts?
Again, all you get are probabilities, and beyond the outlier cases, those probabilities will likely steer you to general lifestyle changes you should already have made. If that is the answer, why spend $99 scaring yourself? The FDA is right. Companies like 23andMe could be decades early to the party and when that party comes, it should probably be held in a trained specialist’s office.