The New England Journal of Medicine is taking a lot of shots for this editorial on the sharing of data. After starting out by talking about how the idea of sharing clinical data is an appealing one, you have this:
However, many of us who have actually conducted clinical research, managed clinical studies and data collection and analysis, and curated data sets have concerns about the details. The first concern is that someone not involved in the generation and collection of the data may not understand the choices made in defining the parameters. Special problems arise if data are to be combined from independent studies and considered comparable. How heterogeneous were the study populations? Were the eligibility criteria the same? Can it be assumed that the differences in study populations, data collection and analysis, and treatments, both protocol-specified and unspecified, can be ignored?
A second concern held by some is that a new class of research person will emerge — people who had nothing to do with the design and execution of the study but use another group’s data for their own ends, possibly stealing from the research productivity planned by the data gatherers, or even use the data to try to disprove what the original investigators had posited. There is concern among some front-line researchers that the system will be taken over by what some researchers have characterized as “research parasites.”
It’s that second paragraph that really sets people off, and it is unfortunately worded. Science actually advances on this sort of thing – calling people who use or build on previous data sets “research parasites” is actually fairly silly. And how dare anyone try to disprove what some other group has claimed! No, this is just weird. And that’s too bad, because that weirdness has totally overshadowed the paragraph before it, which is actually pretty sensible.
I don’t worry about parasitic scientists rooting through the piles of clinical data – I worry about people who are trying to prove that eating GMO food synergizes with your astrological sign in order to misalign your chakras. I worry about folks selling snake-oil supplements who will spend five minutes sifting through some database in order to say “Clinical studies prove. . .!” And I worry about people who will decide that every single drug that’s ever been through the clinic is obviously a toxic plot concocted by poisoners because, I mean, just look at these numbers. The NEJM is worried about misappropriation of data by rival research groups; I’m worried about the far, far greater number of headline-grabbing idiots. You’re going to wish for some good ol’ research parasites after these people get through flinging dirt everywhere.
Clinical data really are hard to parse and to interpret. Just look at the delays between the end of a clinical trial and the reporting of the data. From the outside, you’d think that a late night after the last patient reports would be enough to get everything lined up, but you’d be wrong. It takes weeks, maybe months, to be sure that you’ve handled the numbers appropriately and that you haven’t missed anything important (good or bad). I just mentioned the other day how hard it is to design decent experiments if you haven’t had much practice at it – designing a good clinical trial can be one of the hardest tests there is, and working up the data properly is an even less widely distributed skill.
So I think it’s perfectly reasonable to be concerned about how people will handle that job, but worrying about “research parasites” is not something that going to cause me much anxiety. We stand on each other’s shoulders in this business; that’s how science works. It’s not the scientists that worry me here.
Addendum: here are some people who aren’t afraid of research parasites, either!