Researchers Honored for Harming Human Subjects

It's Pulitzer Prize season, and once again my dear Columbia University has showered medals on reporters who placed the subjects of their stories at risk of criminal or civil liability or damaged their financial standing, employability, or reputation, all without IRB oversight. This year's board seems to have been particularly bloodthirsty, giving two prizes--rather than the usual one--for investigative reporting, as well as honoring muckraking work with prizes for public service, local reporting, and international reporting.

Since at least the 1970s, IRB critics have asked why such work is honored when a reporter does it but condemned--at least by IRBs--when a scholar is asking the questions. I have yet to find a clear answer from defenders of the system. Here's a typically fuzzy response--Dr. Jeffrey Cohen's statement before the October 2001 meeting of the National Human Research Protections Advisory Committee:

This is a very difficult issue and it borders on the whole issue of the distinction between journalism and research . . . And that is a really murky, murky area. As a matter of fact, it is one of the conversations I had at the Oral History Association because the oral historians are in that same sort of issue. I think that clearly there is a need for more guidance on distinguishing between journalism and research.

I think the courts are doing that. I mean, the courts are addressing what constitutes journalism and the extent and scope of the First Amendment rights, especially in the context of the internet. Publishing something on the internet, does that make it journalism and so forth? And so I think that the human protections movement should look to the courts for guidance on some of that.

There's also a distinction, though, between -- in a sort of common sense way -- between journalism and research. Journalism is done for the public knowledge and for the public good in the sense of providing information the public needs to know. Research has a sort of different context and that is, you know, further -- the development and furthering of generalizable knowledge, which is a somewhat different thing than the public's right to know, although they're blurred.

So I think that it is very clear in practice that the government, institutions and IRBs do have sort of a right or a responsibility particularly when it is focusing not on censorship but on protecting the rights and welfare of the subjects of research to review that, and I think the courts have upheld that. Particularly, I think, was the University of Minnesota case,* which wasn't particularly about human subjects but it was on research integrity. The courts upheld that right as opposed to journalism where infringing on that would be censorship. There is a murky area in between.

There's also the sort of traditional knowledge that your right ends at the tip of my nose. And so that you can't yell fire in a crowded theater. And so there are things that even though we have constitutional rights, we also have the right to protect subjects and that there's a balancing there that needs to be done. It is not that there's an easy answer to that.

The reason that the distinction remains a "really murky, murky area" is that the Department of Health and Human Services has failed, with all of its various commissions and advisory boards, ever to convene a group whose primary mission was to determine the rights and responsibilities of social scientists. (An exception might be the 1966 NIH conference at which social scientists asked to be left alone, but their recommendations were ignored.) Dr. Cohen's statement suggests that in lieu of such an investigation, the matter be turned over to the courts. That may yet happen, but I doubt it will be pretty. The courts can restrain the worst abuses of the present system, but a lawsuit is no substitute for sound policy-making, based on careful fact-finding.

Were regulators to take a serious look at the sort of journalism honored this week, they might find that different modes of inquiry involve different ethical practices, and different ethical goals. But once they concede that, their whole edifice starts to crumble.

See also, "James Weinstein's Anti-Intellectualism."

* Note: I don't know the nature or name of the "University of Minnesota case." I've sent a query to Dr. Cohen, and I hope to replace this footnote with his reply.