Just because something is legal, doesn’t make it right. Just because we enjoy a right of free speech, doesn’t mean we should be verbally insulting people. Just because the Food and Drug Administration (FDA) approves a treatment or a test, doesn’t mean we should pursue it.
The FDA has given approval to 23andMe, a private company, to provide genetic testing directly to individuals. The results provide genetic risks of contracting several medical conditions including Parkinson’s disease and Alzheimer’s disease. No prescription or physician visit is needed. While 23andMe execs and marketers will undoubtedly claim that their mission is to empower the public, this does not tell the whole story. Indeed, many patients who undergo the testing will be worse for having done so.
I would never submit to the 23andMe home testing program myself, nor would I counsel my patients to do so. It seems bizarre that the incredibly complex and nuanced medical issue of genetic risk would be available for direct consumer purchase. We don’t permit patients to order a chest x-ray on themselves, but yet we will give them access to genetic testing results that many doctors like me won’t be able to interpret skillfully. Make sense?
“How much risk can there be if all you have do is to submit a saliva sample?”
The risks come later once the results are in. What is the value of discovering that you are at risk of developing a disease when no available treatment can mitigate this risk? If you learn that you have an increased risk of Alzheimer’s disease, would this knowledge improve your health? Or would your life be filled with worry over a possible agonizing future? Would you wonder when you misplace your keys if the beginning of the end is near? If you knew now that Parkinson’s disease, an incurable and progressive neurologic disease, might be percolating within your brain, would your life be better?
Importantly, having an increased genetic risk does not mean that you will develop the condition. You may very well live a long and happy life without ever developing the disease that you are at risk for.
Of course, we should welcome genetic testing that can detect risks of conditions that we can prevent or influence, an entirely different issue from the one being discussed here. Indeed, genetic testing has helped many of my patients and their families.
Will the public be able to resist the pitch from 23andMe and its competitors? While physicians can educate our patients on the perils of these products, remember that patients are free to purchase them themselves. It is likely that we physicians will be called upon only after the confusing and ominous results are in.
Finally, the genetic risk industry’s true mission may be to sell genetic data to pharmaceutical companies and other institutions, a point not emphasized to the public.
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