to the office of human research protections

So other people with a longer list of credentials than I have wrote far more articulate responses to the proposed changes in federal oversight for research involving human subjects that I wrote about last week. You can read two such responses at the American Historical Association blog and at historian and oral history advocate Zachary Schrag's Institutional Review Blog. If this is something that interests you, I highly recommend checking out their letters in full.

But since this is a blog dedicated to my own oral history project, I thought I would share my own response here. If a PDF is more convenient for you, I've made one available via DropBox.

LETTER SUBMITTED TO THE OFFICE OF HUMAN RESEARCH PROTECTIONS


Anna J. Cook
Assistant Reference Librarian
Massachusetts Historical Society
1154 Boylston St.
Boston, MA 02215

21 October 2011

Office of Human Research Protections
1101 Wootton Parkway
Suite 200
Rockville, MD 20852

To Whom it May Concern:

I am contacting you as special collections librarian and practicing historian with experience conducting oral historical research.

I am writing you today because of my concern over several aspects of the proposed changes to IRB oversight of research involving human subjects. Research “involving human subjects” encompasses much of humanities research, including historians, and many of us are concerned that the proposed changes could have the (perhaps unintended) consequence of irreparably thinning the rich body of primary source materials upon which we rely on for our scholarship – all in the name of curtailing “information risk.”

I am a member of the Oral History Association and the American Historical Association, and I hold a Master of Science in Library Science and a Master of Art in History. For my Master’s thesis I designed and conducted an oral history project documenting the founding of an off-campus study program in the mid-1970s, with the approval of the Institutional Review Board of Simmons College (Boston, Mass.). In designing my research project, I followed the best practices guidelines set forth by the Oral History Association. I was fortunate to work with an IRB panel familiar with the particular professional standards of oral historical work. As Zachary Schrag has documented, in his recent book Ethical Imperialism (Johns Hopkins, 2010), this is often not the case.

The interviewees whose stories I record all give explicit informed consent to participate in the research project. Integral to their consent is the understanding that their interviews would be made available for research in both recorded and transcript form when I deposit those interviews in an archival repository. Their names and identifying details are a necessary part of both their personal stories and the larger historical narrative which I am constructing about the off-campus study program which they established. In my profession, it is essential that the evidence upon which I base my historical claims be verifiable and accessible to future researchers. If I were required to obscure the details of a person’s identity or destroy the oral
historical interview following publication, my work would not be considered professionally acceptable in my field. Yet these are the type of requirements routinely made in the context of biomedical and social science research – which the IRB system justifiably oversees.

Your recommendation that HIPAA standards be applied more broadly highlights the danger of a “one size fits all” approach to protection of personal information. As a historian and librarian who works regularly with archival material containing intimate personal details, I have seen first-hand how application of HIPAA regulations to manuscript collections and archival records has stymied important historical research in the name of patient privacy – even when the individuals in question are generations behind us – at times, over a century deceased.

Historical research, and more specifically oral historical research, was never intended to fall under Institutional Review Board oversight. As both the AHA and the OHA have made clear, this is not an indication that the field is except from the rigorous demand of professional standards – but an acknowledgment that oral history already has its own principles and best practices that govern the conduct of oral histories in an ethically responsible way. Our standards are applied in fundamentally different ways than the scientific procedures and criteria administered by IRBs, and to explicitly exclude historical and oral historical research from the IRB mandate would be to correct the mis-application of IRB authority in a sphere where they are often ill-equipped to provide guidance.

I thank you for making it possible for the public to provide feedback on the suggested changes, and I urge you to listen to the recommendations of practitioners in the field who have a clear view to how these proposed changes can effect the practice of history for generations to come.

Sincerely,
Anna

Anna J. Cook, M.A., M.L.S.
Assistant Reference Librarian
Massachusetts Historical Society

federal oversight of oral history in flux

The Department of Health and Human Services is in the process of revising its guidelines for the operation of Institutional Review Boards, the apparatus for overseeing research involving human subjects. IRBs originated in the 1970s in an attempt to regulate human subject research and curb abuses such as the Tuskegee syphilis experiment in which patients were treated as test subjects in a study on the progression of the disease -- without their knowledge or consent.  Since the mid-1990s, the IRBs have increasingly insisted on oversight of oral historical research, a process that bears little resemblance to the type of medical, psychological, or even social science research. I, myself, went through the review process in order to conduct my interviews with Oregon Extension alums. I had the good fortune to work with an IRB panel that was knowledgeable about oral historical practices, and found the process a fairly painless and at times even useful one. It gave me a chance to clarify my methodology and justify my practices with theory. Not all oral historians, however, have been so lucky.

The revision of the rules governing research involving human subjects offers historians the opportunity to advocate for improved guidelines that would correct this square-peg-in-a-round-hole situation. The preliminary findings of the working group, however, also indicate that new rules may bring with them new dilemmas. In particular, many historians are concerned that the guidelines create a false division between scientific research ("real" research) and humanities research (not-real research), a move that implies the work that oral historians do is less than professional. As Robert B. Townsend wrote in the September issue of Perspectives:

In 2004, the AHA and Oral History Association worked with HHS on the formulation proposed here (that history does not constitute “research that creates generalizable knowledge”). Unfortunately, the argument prompted some derision from outside the field, from academics who interpreted the phrase to say simply “history is not research.” (As a case in point, the vice president for research at my own university, after a fairly contentious meeting on the subject, wished me well on my “;non-research dissertation.”)

We also received a number of complaints from within the discipline. Some historians argue that history does contribute generalizable knowledge, even if it bears little resemblance to the scientific definition of the word. And faculty members at history of medicine departments and in the social science side of history warned that this position undermined both their institutional standing and their ability to obtain grants. They made it clear that however finely worded, stating that history did not constitute research in even the most bureaucratic terms could have some real financial costs to the discipline.

The American Historical Association has put together a list of "talking points" concerning the proposed changes, if you are interested in the in-a-nutshell version of their concerns.

quick hit: fellow researcher Philip Francis

Earlier this fall, I recieved an email from an author whose book I reviewed over at the feminist librarian. He thanked me kindly for the review and remarked upon the fact that I was involved in research about the Oregon Extension. Was I, by any chance, familiar with the work of his former student Philip Francis, who had recently graduated from Harvard Divinity School with his PhD in Religion and Society? I was not -- but now I am! 


amazingly enough, two people researching the OE --
just one river apart!

 Francis, it transpires, is working on a project looking at the role of aesthetics in facilitating counter-conversions out of fundamentalist evangelical faith. His dissertation, "We Dive and Reappear in New Places: Aesthetic Experience and Fundamentalism Undone" (May 2011), is available through the ProQuest subscription database. The abstract reads: 

This dissertation is an ethnographic study of 100 men and women who grew up in an American fundamentalist Christian community and left it, and for whom the arts played an instrumental role in the process of leaving. The majority of these individuals are alumni of the Bob Jones University School of Fine Art, a fundamentalist Christian college in Greenville, South Carolina, or The Oregon Extension, an aesthetically charged semester study-away program that draws its students from conservative Evangelical Christian colleges. Each individual contributed a memoir to the study and the majority were interviewed as well. Each chapter explores the role of aesthetic experience in the undoing of a different fundamentalist method of belief preservation. Methods of beliefpreservation, or what C.S. Peirce called the ‘fixations of belief,’ are ways of securing beliefs, of rendering them steadfast by cultivating certain mindsets, relationships and practices that play upon what William James referred to as the “inherent conservatism of mind.” My argument should not be read as a general theory of a necessary causal relationship between aesthetic experience and the undoing of fundamentalism. My thesis moves in a different direction. I ask how, in what manner, and under what conditions, does aesthetic experience function in the process of upending fundamentalism, in those circumstances when it does so function.

Needless to say, I obtained a copy of the thesis as quickly as possible and read through it. Since then, Francis and I have been able to meet over lunch and talk about possible future collaboration, bringing together his work on the theological and psychological work of the OE with my historical perspective on these labors. It is exciting for me to connect with another scholar interested in the same topic, but from a slightly different perspective. Francis himself never attended the Oregon Extension (though he had friends in college who did). Unlike me, Francis hails from a more fundamentalist, evangelical background and -- like many Oregon Extension participants -- has come to question that perspective as an adult.

I encourage all of you to check out his dissertation if you have access to ProQuest through your local library, and keep an eye out for his future articles and publications. If any come across my desk, I'll be sure to share them here.