Getting the OK to Interview Grandma

Wednesday, November 8, at 12 noon, U.S. Eastern time

Robert B. Townsend, assistant director for research and publications at the American Historical Association, is the author of more than 100 articles about the historical profession in the United States.

A transcript of the chat follows.

Jennifer Howard (Moderator):
    Hello, and welcome to today's colloquy on oral history and IRBs. I'd like to thank Robert B. Townsend of the American Historical Association for joining us today. He's been closely tracking this issue for the AHA for several years now. I'd also like to hear stories, good or bad, from people about their experiences with IRBs. Perspectives from the other side welcome, too. Any IRB members with us today?

Question from Mary Zamon, George Mason University:
    We seem to be facing an expansion of review down into undergraduate classroom projects. Some of them are the kind that should be reveiwed- ie publication, generalizability, but our board has asked that all classroom projects - including the history oral work, anthropology and other humanities projects--go through a process of student application to the course instructor, who then sends in paperwork to the board. There is opinion here that this is beyond the scope of federal regulations, and moving toward control of class assignments/projects. On the other hand, there is a strong push to increase undergraduate research opportunities. How widespread are issues like this and what have others done?

Thanks!

mary

Robert B. Townsend:
    One of the real problems we have had in trying to address this issue is the lack of clear or consistent standards about what should be covered and how it fits into the regulatory process. In my discussions with various IRB officials and the federal Office of Human Research Protections we have been told repeatedly that the regulations represent "a floor, not a ceiling" for regulatory review, which leaves pretty wide latitude for how far the rules can (and perhaps will) extend. Unfortunately, what we know about their application tends to be all anecdotal. We did try to survey the policies posted on the web sites of 252 colleges and universities, but found that the articulation of rules at the local level is pretty scanty.

Question from Jennifer Howard:
    Rob, has the AHA been hearing more stories like Ms. Zamon's--about IRBs training their attention on undergraduate projects? I'd also be curious to hear from other folks who have encountered this in their classrooms.

Robert B. Townsend:
    The only case I can think of is the cases you reported about from Dr. Shenk.

Question from Jacqueline Jackson-Young, mid-sized academic medical center:
    This may sound naive and somewhat dishonest, however I bet others have thought of this and haven't asked: if you know that you will receive this type of scrutiny and rigorous review by your IRB, why alert them at all ? The intent of my proposed oral hx. project is to not do actual research, although part of a graduate school final project around intergenerational communication and learning.

Robert B. Townsend:
    There is a "sleeping dog" problem here, and most oral historians have taken that road. The risk arises when you are caught, or for graduate students when your work passes through a level of administrative review--when the dissertation passes through the dean's office, for instance.

Question from Jennifer Howard:
    What sorts of penalties is a scholar or a graduate student likely to incur if he or she chooses the "sleeping dog" route? Is a senior scholar more likely to ignore the IRB and get away with it?

Robert B. Townsend:
    A number of senior scholars have told me they asked their IRB what the risk was, and they were told "a letter in your file." They seem content to ignore them. For a junior faculty member--fearing a blot on their record for tenure--or a doctoral student afraid that their dissertation will be held up, there are some real penalties to consider.

Jennifer Howard (Moderator):
    We have a comment from Linda Shopes, past president of the Oral History Association, that pertains to the earlier question from GMU. I've asked her to sit in on the chat today and share her expertise as well. Welcome, Linda.

Comment from Linda Shopes, Pa. Historical & Museum Commission:
    In response to Ms. Zamon, the AAUP has noted that some schools make the distinction between research and pedagogy; and interviews conducted soley as pedagogical exercises are not subject to review.

Question from George Dowdall, Saint Joseph's University:
    Are there any circumstances under which an oral history research project does not have to be submitted to an IRB? Thanks for your response.

Robert B. Townsend:
    The issue starts at the local level. It appears to be entirely dependent on the policies and practices of the college or university you happen to work in. The Association is on record as believing in general oral history should not be subject to review.

Question from John Truman State University:
    What is the AHA official position on the need for oral historians to use IRB procedures?

Robert B. Townsend:
    At the most general level, we believe that institutional review boards are applying criteria that are inappropriate to our discipline, and doing so in ambiguous and inconsistent ways. While the Association considers the rules entirely appropriate for the areas of scientific and behavioral research for which they were created, they should not be broadly applied to oral history research. Quite frankly, their application to oral history seems like a distraction from the real work that the IRBs should be doing.

Question from Katie McCormick, UNC Charlotte:
    I have seen examples of policies from a couple IRBs that exclude Oral Histories from the protocol process UNLESS there are plans to deposit the interviews in an archive. As an archivist and oral history collection manager, this concerns me on a number of levels. I wonder if you have seen many such policies and if you might address some of the potential issues as you understand them.

Robert B. Townsend:
    Yes, I have heard conflicting descriptions of this issue. I know at some schools, the process of recording them for deposit is not "research." At other schools, this has come under full IRB scrutiny. I think it is important to mention that the Association does believe that historians need to adhere to strong and consistent professional standards in the conduct of oral history research. The Association has strongly endorsed and promulgated the standards developed by the Oral History Association (which are online at http://omega.dickinson.edu/organizations/oha/pub_eg.html ) that discuss these issues in more detail.

Question from Ann, Large Research Institution:
    I'll risk outing myself as an IRB administrator just to note that the consequences for not seeking IRB review and approval can be substantial and certainly more than a note in your file, depending on the funding source and institutional policies.

Robert B. Townsend:
    Yes, it is precisely this ambiguity that we find so troubling about the implementation of these policies. In our survey of the posted policies on college and university web sites, the only guidance a faculty member or student will find is a passing mention of oral history among the research methods subject to "expedited" review. Reading through them, the rule seems to be, "bring your project to us, and then we'll make up the rules and policies that apply."

Comment from Jennifer Howard:
    Ann, what sorts of penalties have you encountered (or imposed!) on scholars who flout the IRB?

Comment from Linda Shopes, PA Historical & Museum Commission:
    In response to Professor Dowdall, part of the problem is that although federal regulations "exempt" certain categories of research from IRB review, exemption itself is to be granted by the IRB, not the individual researcher. What this means, in effect, is that a researcher has to submit protocols - albeit sometimes in less comprehensive form - to an IRB to get exemption status from the IRB.

Question from Nora Rubinstein, Place/Space Associates:
    As someone who has been doing ethnographic research for most of my career, it seems to me that one of the distinctions that must be made has to do with the USE of the oral history. Will it be used in the classroom only, or is there an internt to publish? If it will be published, it seems the ethical (and hence human subjects obligations) are crucial. That is not to say that there aren't also obligations for in-classroom work; there are. But if I intended to publish the oral history, I think the "subject" has a right to expect that we meet certain standards and htat we respect their right to anonymity or identification; and accuracy in the representation of their words; and control of the context in which that oral history is disseminated.

Robert B. Townsend:
    We certainly agree that there are standards of professional practice that need to be adhered to. Our objection is to the IRBs as a mechanism.

Question from Hijoo Son, UCLA:
    I interview visual artists, curators, and others related to producing/showcasing exhibitions, biannials, and so on in various Pacific Rim countries (viz., Japan, China, U.S., South Korea). Normally I have them consent orally to my using the interview transcription for research purposes, as I start recording the interview. With the "gift statement" do I also have to clarify to my informants that I will show them the research results/writing before I make it accessible (publish) for research purposes also? I was taught in my methodologies seminar that I am not responsible to present or show results/writins to informants. Thank you in advance. Hijoo Son

Robert B. Townsend:
    Best practices would be to obtain written consent. Allowing the subject to review the results of your search would seem to open the door to an intrusion on your academic freedom.

Question from Susan Lawrence, University of Iowa:
    Rob:

I am a historian of medicine who has a 50% appointment in a bioethics and humanities program in the medical college at the University of Iowa. I'm not on an IRB, but I come into lots of contact with those who regularly use IRBs, who teach research ethics to bio-medical scientists, etc. In my reading of the IRB literature and the regulations on "human subjects" (NIH) and "research participants" (the NSF phrase), what most concerns me is the IRB concern that "subjects" face "minimal harm." In the details of how this is interpreted, it means concern for questions that might harm the subject psychologically as well as socially -- ie get information that could have legal consequences, etc. So, much of the emphasis is on protecting the confidentiality of the subject's identity at all costs. On the other hand, oral historians and others are anxious that tape recordings or transcripts are deposited in archives for open use. When IRBs focus on informed consent for interviews, required the list of questions to be asked in advance, and otherwise try to pin down the details of the researcher's methods and goals, it seems to me that they are trying to protect too much. Given that there is a serious history of research abuse, how are we to negotiate the "problem" of asking people hard questions about their lives and experiences? Questions the might seem to others to be psychologically or socially "harmful" when taken out of context? And then to keep the identity of the person confidential, when part of the purpose of the record is to identify and recognize real people? I have asked quite a few questions here!

Susan

Robert B. Townsend:
    I think you've articulated most of the problems that historians have with IRBs, and why we consider this a disciplinary issue. In general the arguments for bringing oral history under IRB review seem to fall into one of three broad categories: 1) that this is just a benign form of peer review, 2) that the rules exist so we have to follow them, or 3) that any contact with a living person is an opportunity for harm and has to be regulated. Our objection to the first is that this work is rarely reviewed by knowledgeable peers, to the second that the arbitrary and inappropriate application of rules should be questioned, and to the third that we see a clear line between the Tuskeegee experiments and interviewing someone--a distinction that the regulations and the regulators often fail to acknowledge. We feel obliged to oppose the application of the regulations under those circumstances.

Comment from Ann, Large Reserach Institution:
    Jennifer, This varies depending on the situation, but at the far end can include suspension of PI status, reporting to the funding agency as well as OHRP, retraction of publications, etc. Again, these are the more severe consequences. Noncompliance is handled differently depending on a number of variables, but I don't know too many institutions where a slap on the wrist is the only response.

Comment from Linda Shopes again:
    To Ms. McCormick: Many oral historians would say that oral history research is defined as archival, that the distinction between that which is archived and that which is not is a false one. Historians support open access to sources; research built upon a private stash of interviews - that is to say, not in the public record - does violate a canon of our field.

Question from Ron Doel, University of Utah [Dept of History] / Oregon State University:
    Can you -- or one of your colleagues -- provide a brief overview of institutional review for oral history projects undertaken in western Europe?

I've recently become Project Leader of an international eight-member team of historians studying the 20th century Arctic [history of science / environmental history], supported by a new initiative from the European Science Foundation. We've been tasked to develop a policy for evaluating 'data' created and assembled through our project -- and appreciate that oral history may emerge as a key issue in these deliberations.

Our thanks for any advice and guidance.

Robert B. Townsend:
    An excellent question, but I am afraid I don't have any information for you. The rules we have dealt with all seem to fall under a particular university in the U.S.

Question from John Fraire, Truman State University:
    I am Chicano and have collected the oral histories of the first Mexicans to settle in my home area of East Chicago, Indiana. At first I employed irb rules, at the insistence of the program I was in at the time. I no longer follow those procedures, but I do have my subjects (many of whom are my parents friends and family, including my mother and uncles) sign a consent form. Does the AHA have an official policy on the need for oral historians to follow irb rules?

Jennifer Howard (Moderator): :
    See Rob's earlier answer about AHA policy.

Comment from Linda Shopes:
    Narrators should always have the option of maintaining anonymity; to require it can -- and has -- violated narrators' own interests in making their stories public. And, it is my view that historians' job is not fundamentally to protect people, but to follow the evidence and to tell "the truth," as best we can. Why, for example, should we not interview people about race relations when the results might "embarrass" them, as one IRB insisted?

Question from Barbara Truesdell, Indiana University:
    I just took the Human Subjects test required by our university of all investigators, and that included a tutorial that discussed the extension of IRB oversight to "existing data," not just to direct interaction between researchers and their informants. The model they are drawing on is medical, of course--tissue samples, medical histories, etc., with and without personally identifiable data. Our center has a large collection of oral history interviews in our archive, and while our IRB here hasn't extended its reach into already archived interviews as far as I know, I was wondering if other institutions or researchers are already seeing that level of oversight.

Robert B. Townsend:
    Yes, a number of institutions have extended their oversight to use of interviews in archives. Again, it is on a school-by-school basis, so there is no uniformity in the way this works at the local level. At some institutions, this use of existing data is the point where materials become "research" under their definition of the rules.

Question from Ron [Large Research University]:
    Are IRB-type reviews of oral history projects also occurring at universities in Western Europe?

I ask because I'm now involved in an international collaboration of historians [some based in Scandinavia]. The issue of what counts as 'data' in the humanities has come up in discussions, though my colleagues there seem to find this unfamiliar territory. Thanks.

Robert B. Townsend:
    Unfortunately, we have only been able to collect information--and anecdotes--from colleges and universities in the U.S.

Comment from Jennifer Howard:
    Do we have any scholars with us who might be able to fill us in on other countries' human-research regulations and their impact on oral history being conducted outside the U.S. context? Is this a global problem for researchers?

Question from Alan H. Stein, MLIS Consortium of Oral History Educators:
    As Program Co-Chair of this year’s annual Oral History Association Conference in Little Rock we organized sessions and a plenary reflecting what Dr. Stephen Sloan called a diverse interest in many disciplines interested in dealing with the (Katrina) storm and its aftermath. I would like to pose a couple of questions to expand on this discussion. Should Katrina victims who were used as volunteers be exempt from the IRB's?* Should the numerous “bottom up” community history projects like “Alive-in-Truth” be purged from the historical record (or on the Internet)because volunteers at shelters in Austin and Houston did not get IRB/releases? Do we miss the opportunity to document “urgent” oral history as a result of policy decisions?

Do IRB’s hinder the documentation and collection of oral histories in emerging crisis situations – like those after Katrina/Rita and Wilma? FYI: After the storms the Oral History Association inaugurated an “Emerging Crisis Oral History Fund” to help fund and facilitate projects.

*As Houston's post-hurricane population swelled by 250,000, Carl Lindahl, a folklorist and English professor at the University of Houston started conducting several interviews with evacuees, eventually expanding it into “Surviving Katrina and Rita in Houston” with his colleague, Patricia Jasper, a folklorist with over 20 years of experience. They taught volunteers how to interview evacuees, because, Lindahl explained, “We've found that a person who has gone through this is a much better interviewer than those who have not. I found the survivors to be heroes rather than victims.”

Robert B. Townsend:
    Obviously, we think you should be able to collect this kind of vital information for the historical record. This is a good example of the problems that seem endemic to IRBs.

Question from Susan Lawrence, University of Iowa:
    What can we do to act? There are over 4000 IRBs in the US. I have no idea how many of these are specifically for the social and behavioral sciences. There is no central oversight, although there is a broad movement to "certify" IRBs, although whether that is a professional group or a plan for a federal process, I don't know. If changing the human subjects rules (45 CFR 46, et alia) is required, that suggests legislative action...! What else can we do?

Robert B. Townsend:
    This is the core of the problem, and the primary reason for our frustration at this issue. We thought that by going to the federal regulators we could effect change at the national level. What we have discovered in practice, is that the federal regulations just serve as the starting point for regulations developed at the institutional level. Risk averse university administrators seem to be the real problem here.

Comment from Barbara Truesdell, Indiana University:
    Regarding international IRBs, the OHRP website includes a search engine for locating international IRBs at http://ohrp.cit.nih.gov/search/asearch.asp . I know of one instance in a social science study where the researcher was told to secure oversight from an international IRB, extending the "multi-site study" model of IRB oversight beyond US borders.

Comment from Linda Shopes:
    I believe there is language in 45 CFR 46 that suggests that "data" on the public record is not subject to IRB review.

Jennifer Howard (Moderator):
    Linda's referring to the section of the federal regulations that covers human-subjects research: http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.htm

Comment from Linda Shopes:
    In many ways, the best we can do right now is work to educate individual IRBs about the methodolgical particulars - and the existing ethical guidelines - for oral history. In more than one case, such action has led to a much more accommodating stance by the IRB vis a vis oral history. Most IRB members, after all, are conscientious and thoughtful people, who simply have not considered the particularities of oral history.

Question from David E. Herrington, Prairie View A&M University:
    As an oral historian there are several distinct ways to ensure reliability of the interview. I conducted oral interviews 15 years ago and now find myself preparing follow-up interviews with the same informants. I face a threat of being unable to ask the same questions asked previously regarding barriers faced by identified members of a minority group. How is it possible to protect anonymity in such a study and how is it possible for history as we know it to be history without identifiable players during an important event in time and place?

Robert B. Townsend:
    This is a fundamental issue we have with the extension of IRB criteria over oral history research. In many cases history is about the particular, the individual, the unique events that shape a life. The problem we have with IRBs is that they apply standards based on medical research criteria, criteria for harm that don't apply when someone is speaking about their role in a historical event.

Question from Nora Rubinstein, Place/Space Associates:
    I would like to suggest, that the question seems to settle more on what the appropriate standards of review might be, than whether there should be standards. What if "we" considered re-inventing the IRB to accommodate qualitative research - Oral History, Ethnography etc. It would require a re-framing of the critical issues -- from anonymity or identification, to archiving, to the character of "incentives," to the issues of what Dr. Townsend terms "academic freedom" in having the "participant/ subject" review the material gathered. It would seem that the problem is one of adopting standards defined for bio-medical research and applying them to what is a very different practice, but with equal potential for harm.

Robert B. Townsend:
    The problem is that the rules as they now exist seem to leave little room for the concerns and criteria of our discipline. Beyond that, at the local level the universities do not seem to have much interest in adapting their policies.

Question from Katie McCormick, UNC Charlotte:
    It seems one of the many issues related to IRBs is the often distant/disconnected nature of the Board's work and to a majority of a university's community. There is a real need on all campuses for historians to continue to engage their IRB on these issues and to find ways to make the process more transparent and ameniable for those required to submit protocols and ultimately more understanding to the issues of viewing oral history through a human subject research lense. Until there is a clear and unequivocal statement from the federal government exempting ALL oral history from the definition of human subject research and mandated IRB review, you will be very hard pressed to get a majority of the individual insitutions and IRBs to acquiesce.

I offer this as an archivist, oral historian, and IRB member - I would absolutely prefer that oral history interviews were exempted from IRB review based on their adherence to the professional and ethical standards set forth by the OHA and AHA but until that point we need to be vocal advocates on our campuses (particualrly to higher level administration)- I think it at the core of the issue is a broad based misunderstanding or lack of knowledge about the oral history process.

Robert B. Townsend:
    This is a terrific summary of the issues, and what we as historians need to do on all campuses. The AHA can make as many policy statements as it wants, but until historians on the local level engage with their administrations, the ambiguity and problems will persist.

Question from Barbara Need, U of Chicago, Language Archives:
    Linguists and anthropologists have similar concerns. In addition, there may be cultural reasons the consultants are reluctant to sign anything. I know of one case where the IRB board refused to allow oral consent--and this in a community where the consultants probably were not literate in their native language, and did not know the relevant European languages. I know of another case where the IRB requirement that the language of the consent form be at the 8th grade level and that a "no harm" clause be entered was a problem for a student doing research in Japan--where the population he was familiar with preferred formal language and no mention of harm.

On the other hand, we have three IRB boards on campus--one specifically for Humanities and Social Sciences and recently social scientists have been well represented, so at least they know the issues. Students are not required to submit paperwork for classwork.

I manage an archive of recorded audio with recordings that date back to the early part of the last century as well as more recent collections. The early stuff has no written informed consent, but the consultants were surely told why they were being recorded and allowed it. Also, I believe that the researchers followed the relevant procedures of the time (including collecting personal information). We are digitizing part of that collection, and I have been told by our IRB people that as long as it is part of our archival function, we can digitize and distribute the audio with no alterations. It will only be an IRB issue should someone wish to do more research with it. (Something that needs to be considered for all items in archives--someone may come along with an interest in some aspect of the collected data not part of the original research. Say a phonetic analysis of an oral history.)

We are also concerned with the anonimity question--speakers of dying languages would prefer to retain "ownership" of their languages. Why should the default in these cases be to divorce the names from the data?

Robert B. Townsend:
    Our concerns are one small part of a larger problem, it seems. The AAUP has just published a terrific report placing this in a much larger context at http://www.aaup.org/AAUP/pubsres/academe/2006/SO/Rep/ResearchonHumanSubjects.htm

Question from Mary , George Mason University:
    Reply to question re existing data: Our requirement is to have a letter from the official custodian of the data that we have permission to use it. This is reasonable, and leaves the custodian to ask us about issues

Mary

Question from Susan Lawrence, Univerisity of Iowa:
    "Data" in the public domain or in the public record is not subject to IRB review. The question is to what extent some "private" material in archives is "public." Hence the records of oral interviews (audio tape, video tape, transcriptions) can be seen from both perspectives, as it is "unpublished data" from the bio-science perspective.

Apologies in advance for apparent self promotion: I have an article coming out in the Journal of the History of Medicine and Allied Sciences that addresses the effect of HIPAA on historical work. HIPAA is pretty narrow (in some senses) and doesn't apply directly to oral history interviews -- unless they have been deposited in archives that are explicitly covered by HIPAA, such as the medical archives at Columbia and Johns Hopkins.

What concerns me about HIPAA and how it relates to this topic is that it expands IRB-like review to the records of the deceased in perpetuity. Again-- this is narrow and comes from medical confidentiality -- but the regulators were, and are, oblivious to the historical perspective.

Robert B. Townsend:
    Yes, we have heard of a few cases where the application of the HIPAA (Health Insurance Portability and Accountability Act) regulations are closing off portions of the historical record in ways that could be quite troubling. I doubt historians could have reported about the Tuskegee experiments under those regulations. It potentially makes it more difficult to hold doctors to account by making patient records confidential and thus closing off these records to historical research in perpetuity.

Question from Kathy, Independent Scholar:
    I am curious to know if there are any efforts to address these issues that involve a consortium of humanities disciplines. I see many disciplines struggling separately, perhaps re-creating the same wheels...

Robert B. Townsend:
    Yes, we have been talking to a number of other disciplinary societies and staff at the AAUP about how we might work together on this problem. Obviously, it is very hard to approach when the problem seems distributed out to thousands of colleges and universities.

Question from Jennifer Howard:
    To add to Kathy's question: Is the recent AAUP report likely to be a rallying point for an interdisciplinary push?

Robert B. Townsend:
    I hope so.

Comment from Linda Shopes:
    In response to Ms. Lawrence: oral history interveiws are understood as copyrightable documents, with copyright owned by the narrator - hence the need for a legal release form from the narrator establishing the terms by which the interview can be made public. Indeed, not part of the biommedical model.

Jennifer Howard (Moderator):
    Well, we've gone past the allotted hour. Clearly this isn't an an issue that's going away any time soon. Thanks to everybody who joined the discussion, asked questions, and shared their thoughts. And many thanks to Robert Townsend, for sharing his time and expertise, and to Linda Shopes for contributing hers as well.