From the Jewish Daily Forward:
“If you test positive for something and go online and start reading, you have to know what’s accurate information and what isn’t,” said Rhonda Buyers, executive director of the National Gaucher Foundation. “There’s a lot of junk online, and you could be reading inaccurate information and say, ‘Oh my God, it’s fatal. I’m going to die.’ There could be treatments that you’re not hearing about.”
But Misha Angrist, an assistant professor at the Duke Institute for Genome Sciences & Policy, said that requiring health care providers to serve as gatekeepers for genetic information is unrealistic. “Within not that many years, the technology will be such that people can do this in their garage, and to say that you should have to go through a doctor is naïve,” he said, citing the limited number of medical geneticists and genetic counselors. “The infrastructure of medical genetics is not up to holding everybody’s hands.”
Well, it’s not only the folly of the status quo that singes my shorts. It’s the cockroach-like survivability of good old-fashioned genetic exceptionalism. Notice how the Gaucher Foundation director assumes that the reaction to one’s genetic test results will be horrific, worst-case-scenario, “I’m-going-to-meet-my-maker.” She assumes that the vulnerable googler will come upon erroneous information and draw the wrong conclusion. She assumes that that person will suffer for her actions. To paraphrase all the DTC haters, “show me the data.”
Last week I had minor, elective surgery. (I’ll spare you the details; it was painful, but as far as I know, successful and uneventful.) Two things to note:
- Before taking acetaminophen with codeine, I checked my genome to see if I carried an allele that made me less likely to respond to codeine. The CYP2D6 literature is a bit of a mess, but I concluded that I probably metabolized codeine normally and so took some Tylenol III feeling fairly certain I was not wasting my time in doing so. And I wasn’t (at least until I got my oxycodone scrip filled…yeah baby).
- A couple days after the surgery, I got an email from the hospital: my pre-op lab results could be downloaded. “Cool!” I thought. Perhaps the end of the buggy whip was nigh! I opened up the pdf and looked at my various blood cell counts. My white cell count was bolded and *asterisked*. Hmmm…why was that? No explanation. No mediation. No hand-holding!
Clearly the next step was to jump off a building. A few minutes of web-surfing assured me that my WBC count was not that high and probably suggestive of a minor infection the week before.
But the point is this: I don’t remember consenting to this data exchange. Thus, I was sent information online: 1) that I probably did not ask for; 2) without any guidance; and 3) for which there was no a priori reason to assume comprehension on my part. And guess what: it was okay! I could have chosen not to open the file or I could have contacted someone at the hospital and asked them to walk me through it. Instead I reckoned I could handle it…and I did. Next.
I have to believe that these sorts of lab test results are being dispensed in this way everyday to thousands of surgical patients who are, like I am this week, laid up and not at their best. To my knowledge, however, neither the Energy and Commerce Committee, nor the FDA, nor the GAO, nor the CDC nor any other would-be guardian of the public health has ever made a peep about this practice. (I imagine they are too busy chasing purveyors of Reckless Legs Syndrome risk estimates.)
In all seriousness, I was thrilled that my hospital opted to share my data with me via the simple act of sending me a pdf. The time has come to re-evaluate our reflexive response to information about ourselves, i.e., that we must be protected from it at all costs and/or spoon-fed it via some anointed bureaucracy. Because frankly, if those are the hurdles, then many of us will simply never bother. After all, we have more pressing questions. Like WHERE’S MY PERCOCET????