A friend tapped me to bring some thoughts from the private account over to the public account, so here we are, a rare instance where my Yelling About Research Ethics Corner goes public.

This thread is brought to you by this article about genetic research: https://www.wired.com/story/how-earnest-research-into-gay-genetics-went-wrong/

and also by this good thread: https://twitter.com/thatgirljj/status/1199368822966218752

Thinking over all of this today reminded me of a discussion I had recently with a scientist who worked in autonomous vehicle research long ago but has gone on to other unrelated research pursuits. Still, we ended up talking a bit about the cars.

This scientist hasn't been near autonomous vehicles since long before they hit the public roadways. But, he told me, he still thinks pretty much every day about the legacy of that very early research he did.

He thinks a lot about the changes that autonomous vehicles have brought and will bring to our society. He clearly believes that overall the good will outweigh the bad, but he knows that the bad is there, and real, and already has a body count.

He did amazing research before that and amazing research since, and he could easily move on and never think about the cars again, but he understands the scope of his responsibility, that he owes it to the world to care about the ripple effects of his work even in others' hands.

It was clear to me that this still weighs on him, and affects how he approaches his work today, even in totally unrelated areas. He gets the big picture, having seen that early work grow in ways that would have been hard to imagine at the time.

As someone who works with research ethics issues professionally, that's the kind of understanding that I don't know how to teach or train. "Make friends with your IRB" doesn't begin to touch it, for all the reasons the thread above notes.

As administrative staff, I can lecture myself hoarse about "think about whether the de-identified data you're working with could have ripple effects that will kill Chechnyan queer people" but that doesn't have the impact that hearing from a researcher like this would.

So I'm musing, idly at this point, about whether what we really need is to find researchers like this one, who understand these issues intimately from lived experience, and to try to get them to help develop/lead our ethics education. Not that anyone has the time, but...maybe?

I wish I had a conclusion here, but I really don't, except that that conversation was a really good reminder that it can be easy to think that researchers Don't Get It, but there are many who absolutely do, and there's got to be some way to amplify that hard-earned wisdom.

And also that for god's sake, to go back to that initial link, if you're doing genetic research these days and you're not having Real Damn Serious discussions about the ripple effects of the information you're collecting/storing/publishing...fix that. ASAP.