United States of America Frees Oral History!

This morning sixteen federal agencies announced revisions to the Federal Policy for the Protection of Human Subjects, effective 19 January 2018. The final rule preserves and clarifies the NPRM’s deregulation of oral history. This is a great victory for freedom of speech and for historical research.

University Research and Journalism: Distinctions Without Differences

Google Scholar belatedly alerts me a 2014 article in which two philosophers of education seek to distinguish investigative journalism from university-sponsored community research. They suggest it makes sense to require IRB oversight of the latter but not the former, but their arguments rest on factually doubtful claims of uncertain relevance, and they fail to show that IRB oversight makes sense for either type of research.

[Anne Newman and Ronald David Glass, “Comparing Ethical and Epistemic Standards for Investigative Journalists and Equity-Oriented Collaborative Community-Based Researchers: Why Working for a University Matters,” Journal of Higher Education 85, no. 3 (2014): 283–311, doi:10.1353/jhe.2014.0013.]

NPRM: How to Exclude Journalism?

Few if any argue that journalists should be required to submit their work to IRB review. Some IRB apologists think journalism is too important to bear restriction, while others consider it so full of “blatant bias and even hyperbole” that it doesn’t deserve the dignity of review. But all participants in the debate, at least in United States, seem uncomfortable with the idea of subjecting journalists to prior restraint.

The question, as always, is how to draw the line between journalism and regulated forms of conversation. The NPRM’s proposed rule attempts to do so with a specific exclusion for “Oral history, journalism, biography, and historical scholarship activities that focus directly on the specific individuals about whom the information is collected.” Will that suffice?

Neither the NPRM's language nor SACHRP's proposed replacement is quite right, so let me suggest an alternative.

George Mason University Frees Oral History

George Mason University, my employer and my home, has issued a new Standard Operating Procedure (SOP) on Histories and Journalism, modeled closely on the excellent policies at Columbia and University of California, San Diego.

UCSD Frees Oral History and Journalism

The University of California, San Diego, has determined that most projects by historians and journalists need not be submitted to the IRB.

NRC Report: Liberate Oral History

For historians, the most exciting passage in the new National Research Council report—the passage that had me cheering out loud—is the recommendation that the Common Rule be amended to explicitly exclude historical interviews, as well as other forms of information gathering that do not constitute “human-subjects research specifically in the biomedical, behavioral, and social sciences.”

George Mason University Adopts Shelton Definition, Solicits Faculty Advice

My own institution, George Mason University, has adopted two significant IRB reforms: clarifying the regulatory definition of research, and establishing a faculty advisory board to help shape IRB policies.

Public Health Scholars Question Bioethics Framework

Amy L. Fairchild and David Merritt Johns, both with the Center for the History and Ethics of Public Health, Department of Sociomedical Sciences, Mailman School of Public Health, Columbia University, find that bioethics is "the wrong framework of accountability for some domains of inquiry."

[Amy L. Fairchild and David Merritt Johns. “Beyond Bioethics: Reckoning With the Public Health Paradigm,” American Journal of Public Health 102, no. 8 (August 2012): 1447–1450, DOI: 10.2105/AJPH.2012.300661.]

Berkeley Historian Defends IRB Review of Oral History

Martin Meeker, a historian with the Regional Oral History Office (ROHO) at the University of California, Berkeley, argues that "Historians of the recent past, many of whom use interviews as a source, need to be more systematic about doing oral histories as a form of research [and] that cooperation with IRBs offers one way to do that." What he really means, I think, is that cooperation with IRBs may help historians get legal help from their universities.

[Martin Meeker, "The Berkeley Compromise: Oral History, Human Subjects, and the Meaning of 'Research,'" in Doing Recent History: On Privacy, Copyright, Video Games, Institutional Review Boards, Activist Scholarship, and History That Talks Back, edited by Claire Bond Potter and Renee C. Romano (Athens: University of Georgia Press, 2012).]

Circuit Court Affirms Right to Record Videos in Public

As noted by the New York Times, a recent First Circuit decision in Glik v. Cunniffe affirms the First Amendment right to make video recordings in public places.

Erdos: U.K. Data Protection Act May Stifle Research

David Erdos of the University of Oxford kindly alerted me to two recent publications in which he warns that the United Kingdom's Data Protection Act 1998, which implements European Union requirements, could inhibit social research in much the same way human subjects laws and regulations have done in the United Kingdom, Canada, and the United States.

David Erdos, "Systematically Handicapped? Social Research in the Data Protection Framework, Information & Communications Technology Law 20, no. 2 (2011): 83-101,
doi: 10.1080/13600834.2011.578925
David Erdos, "Stuck in the Thicket? Social Research under the First Data Protection Principle," International Journal of Law and Information Technology 19, No. 2 (2011), doi:10.1093/ijlit/ear001.]

Smithsonian Frees Oral History, Journalism, and Folklore

The Smithsonian Institution has posted a document entitled "HUMAN SUBJECTS RESEARCH FAQs." Although undated, the document appears, from its metadata, to have been last modified on 11 June 2010.

The document makes the Smithsonian the latest in a growing number of prestigious research institutions to provide oral historians, journalists, and folklorists explicit permission to do their work without contacting the IRB. Here are the key questions and answers:

6. Are there any examples of activities that aren't considered Human Subjects Research?

The following are specifically excluded from the definition of Human Subject Research and do not need to be reviewed by the IRB:
• interviews used to provide quotes or illustrative statements, such as those used in journalism;
• collection(s) of oral histories and cultural expressions (e.g., stories, songs, customs, and traditions and accounts thereof) to document a specific historical event or the experience of individuals without intent to draw statistically or quantitatively-based conclusions or generalizations;
• gathering of information from a person to elucidate a particular item (or items) in a museum collection;
• gathering of information from a person to assess suitability for and/or supplement a public program, publication, or cultural performance; or
• survey procedures, interview procedures, or observations of public behavior that are conducted for Smithsonian internal purposes only, the results of which will not be published or presented in a public setting (e.g., at conferences or professional meetings).

7. I think my project is an "oral history" and doesn't need to be reviewed by the IRB. How can I be sure?

The hallmark of an oral history is that it stands alone as a unique perspective rather than an item of data that can be qualitatively analyzed to reach a general conclusion or explanation. If your intention is to interview people who have a unique perspective on a particular historical event or way of life, and you also intend to let the individuals' stories stand alone, with no further analysis, the research is most likely oral history and you do not need to have the research reviewed by the IRB. However, if the surveys or interviews are conducted with the intention of comparing, contrasting, or establishing commonalities between different segments or among members of the same segment, it is safe to say your research will be regular survey/interview procedures, because you will be generalizing the results and your research may need IRB review.

While it is welcome, I can't say this is the most elegant policy. It is hard to track a researcher's intentions and post-interview decisions, rather than his or her conduct of the interviews themselves. And wouldn't a journalist gathering reactions to an event be "comparing, contrasting, or establishing commonalities between different segments or among members of the same segment"?

By contrast, Princeton University distinguishes among types of interviews based on the likelihood that the people being interviewed will understand that they are speaking for the record.

IRB Warns That Opinions May Vary

Michael Bugeja, director of the Greenlee School of Journalism and Communication at Iowa State University, reports a run-in with his IRB.

[Michael Bugeja, "Avatar Rape," Inside Higher Ed, 25 February 2010.]

Bugeja was interested in "avatar rape": forced, simulated sex in a virtual environment such as Second Life. As a journalism professor, he wanted to know what other university scholars and administrators thought about the problem. But his IRB imposed conditions that discouraged responses.

In researching the phenomenon, I sought viewpoints from directors of information technology and women's studies at Big XII and other peer institutions. My research assistant Sam Berbano and I spent two months working with our Institutional Review Board, seeking approval to post our survey online.

Given the sensitive nature of the topic, the IRB asked us to warn survey participants about possible harm to their reputations should their responses be published. To lessen risk, the IRB also required signed copies of consent to anyone responding to our survey. So we opted for a snail mail version with a disclaimer: "A risk of participation in this survey may arise if some may find your opinions in the free-response section at variance with their own."

My research assistant wondered how a survey measuring opinion about avatar rape could have more potential for harm than participation in a virtual environment in which such a digital act could occur.

As it turned out, only one respondent out of 43 provided comments for this essay.

Is variance of opinion the kind of risk to "reputation" against which 45 CFR 46 is supposed to protect? I don't think so, but who knows? The interagency group that inserted "or reputation" into the 1991 regulatory amendments never explained its decision, even in the face of an objection that "reputation is a subjective term that is difficult to define operationally."

What I can say is that as a scholar and educator, I strive to expose people to opinions they do not share. At Iowa State University, such an outcome is classified as a hazard.

Report from SACHRP, Part 3: When Consent Means Censorship

A third item of interest from this month's SACHRP meeting concerns rules about research on Indian reservations.

According to a handout provided at the meeting, in March 2008, Dr. Francine Romero--an epidemiologist and former member of SACHRP--proposed that the Common Rule be amended to specify that

For human subject research to be conducted wtihin the jurisdiction(s) of federally recognized American Indian or Alaska native (AIAN) Tribal government(s), the IRB shall require documentation of explicit Tribal approval for the research. This approval shall come from the Tribal Council or other agency of the Tribal government to whom such authority has been delegated by the Council.

The Subpart A Subcommittee decided that while amending the Common Rule was neither "efficacious, expeditious, nor appropriate," it apparently thought the overall idea a good one, and recommended that OHRP develop guidance to assure that researchers get permission from Tribal governments to do research within their jurisdiction. In the general discussion, various SACHRP members and other federal officials debated whether OHRP was the right office to handle the task, and they modified the recommendation to include other HHS agencies.

As I pointed out during the public comment period, similar rules in Canada have deterred historians from including First Nations Canadians in their research, and give Band Councils veto power over who in their communities gets to talk with a university researcher. And in California, a Tribal government used an IRB to suppress research on labor conditions in casinos. But at no point during the SACHRP discussion did anyone consider the effect the recommendation would have on social science research.

Since 1966, IRB policies have been determined by bodies dominated by medical researchers, and SACHRP is just the latest in a long list. However much medical researchers and administrators may want the trust and respect of social researchers, they simply cannot keep in mind the rights and responsibilities of social scientists when something like this comes up. For medical researchers, it seems, more consent is always better, and they forget that one person's consent is another's censorship.

In related news, today's New York Times reports that the U.S. military has suppressed photographs of American casualties in Iraq by insisting that photojournalists obtain written consent from the troops they photograph:

New embed rules were adopted in the spring of 2007 that required written permission from wounded soldiers before their image could be used, a near impossibility in the case of badly wounded soldiers, journalists say . . . Two New York Times journalists were disembedded in January 2007 after the paper published a photo of a mortally wounded soldier. Though the soldier was shot through the head and died hours after the photo was taken, Lt. Gen. Raymond T. Odierno argued that The Times had broken embed rules by not getting written permission from the soldier.

[Michael Kamber and Tim Arango, "4,000 U.S. Deaths, and Just a Handful of Images," New York Times, 26 July 2008]

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.