And after all we’re only ordinary men.
As a graduate student, I studied the genetics of Hirschsprung disease, a congenital disorder of the nervous system in the gut (and, as I describe in my book, a disease that would affect my own family many years later). Among the things I found to be most gratifying (and yes, occasionally frustrating) in my doctoral studies were the interactions with Hirschsprung patients and families. We students had pledged our fealty to Science writ large, yes, but we weren’t studying roundworms or fruit flies. Our “subjects” (a descriptor of research participants that, in my opinion, is condescending and should be retired ASAP) were thinking feeling human beings. If we found a highly penetrant mutation in their DNA, it had the potential to alter their reproductive decisions and their lives. It meant something to them.
But even if it didn’t, shouldn’t life scientists-in-training, especially those whose model organism is Homo sapiens, have some sort of mandatory exposure to, you know, life? Should there not be some inevitable, meaningful exchange between researcher and researchee?
Increasingly, community members are beginning to assert this right in various ways: Open Science, PatientsLikeMe, the Society for Participatory Medicine and the Sage Bionetworks Commons are just a few manifestations. The recent ScienceOnline meeting, which embodies the same sort of grassroots ethos, is my favorite science gathering for exactly that reason.
But of course participants in these endeavors are self-selected. How do we reify their approaches on a massive scale? Virally spreading the word, certainly. But it will also require bravery and iconoclasm. Recently I read The Cure, Geeta Anand’s heartbreaking 2006 book about John Crowley’s tireless struggle in the early 2000s to get a treatment developed for his kids, two of whom have the devastating lysosomal storage disorder Pompe disease (the book was the basis for the movie Extraordinary Measures). At one point Crowley is trying to impress upon members of the drug development team at Genzyme the urgency of their task. He organizes a “Pompe Summit,” to which the 200 employees working on the disease are invited, as are patients and their families. “How many of you have ever met a patient?” he asks the Genzymers. Only a handful of hands go up. Even the doc leading the company’s Pompe trial had never met a patient. Imagine an automotive design engineer never having driven a car. Extraordinary measures indeed.
I am not naïve. I understand that researcher bandwidth and resources are limited. I recognize that we live in an age of massive datasets, that sharing of those datasets far and wide is essential to scientific progress, that a case can be made for de-identifying those data (not a terribly compelling one—but that’s another discussion) and that doing so would seem to preclude frequent interactions between life scientists and those they study.
But really, come on. We schlep all over the world to attend meetings with our peers. Why not mandate that some fraction of those annual pilgrimages include research participants? Failing that, there’s this thing called Skype—maybe you’ve heard of it? It’s easy and it’s free.
Please don’t misunderstand me: this is not about expiating our guilt or paying back the taxpayers or, heaven forefend, altruism. This is about culture change. It is in the research enterprise’s own interests to move toward inclusion, i.e., pulling back the curtain and, to mix a metaphor and abuse a cliché, letting participants see how the sausage gets made.
We complain about lack of public support for science, funding cuts, and public skepticism about evolution, climate change and, for all I know, gravity. As I imagine you are, I am deeply vexed by both the bean counters and the deniers. And it is entirely possible that nothing will sway them. But if we insist upon paternalism (“you can’t handle the truth”), elitism (“you can’t understand the truth”), and legalism (“if I tell you the truth, you will sue me”), then we can be certain of it.
If biomedical science remains an “us and them” proposition, it bodes well neither for us nor for them.