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AFS Issues Comments on Proposed Changes in IRB Regulations and Practices

Tuesday, October 25, 2011   (0 Comments)
Posted by: Timothy Lloyd
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Today AFS submitted comments to the US Department of Health and Human Services, supporting the statement on possible changes to the Common Rule governing IRB review of ethnographic research that the American Anthropological Association issued over the weekend, and including perspectives from our own field. Our cover letter to HHS also noted AFS's position statement of long standing on these matters, which is on our web site at

The Board's thanks go to Dorry Noyes for her thoughtful and and timely work to draft this response, and to others in the Teagle Project group and in the membership who have weighed in as well.

The text of AFS's comments is below.


American Folklore Society Comments on Proposed Changes to the Common Rule (76 FR 44512)

Like our sister learned societies in the humanities and social sciences, the American Folklore Society welcomes the joint initiative by DHHS and OSTP to reconsider the Common Rule. We are eager to see the revision of the human subjects review process so that it does not produce unintended consequences for the well-being of subjects or the ethical conduct of research.

We strongly endorse the detailed and carefully considered statement submitted by the American Anthropological Association. We are writing here also to add a few general comments from the perspective of folklore studies, a discipline in which scholars often work in close collaboration with community members on projects of mutual interest. Folklorists do not speak of their collaborators as "human subjects" but tend to consider them rather as knowledgeable partners in dialogue and as resources for exploring cultural forms and performances: these cultural practices, not their practitioners, are typically the object of our research.

Human subjects review of qualitative interpretive research commits a category error. OHRP regulations and individual IRBs have developed their procedures taking the controlled lab experiment as the paradigm of all research, but most humanistic research is framed as documentation, interpretation, or conversation.

Interactionist and interpretive research approach generalization differently from the interventionist research that is the appropriate object of human subjects review. The immediate object of ethnographic participant observation and interviewing is to gain knowledge of particulars: the specific complexities of a concrete situation. Interpretation and theory-building mostly come later, in the process of writing up. The researcher does not know beforehand the full parameters of what she will find on the ground. The methodology is therefore based on listening, observation, and conversation in the normal environment of the activity being studied. The ethics of such research demand that the researcher learn and follow the community's rules of conduct and take the community's lead in the direction of the research. This emergent process, with its continual negotiation of consent, is very different from the top-down "systematic investigation, including research development, testing and evaluation" defined by the Common Rule.

Naturally the researcher's presence changes things, in the way that any new entrant to a social setting changes things. When people of different backgrounds, agendas, and resources interact, there are social risks, and where representation and publication are taking place, these risks are exacerbated, in research as in journalism, art, education, politics, social activism, and many other realms of civic life.

We stress again the different center of gravity in interactionist and interpretive research. While humanistic research mimics the procedures of ordinary social life, scientific or interventionist research resembles the functioning of the modern state. The abuses possible in science are roughly comparable to those possible in government: the violation of personal autonomy and physical integrity. The ethical concerns characteristic of humanistic research—respect, reputation, and recognition—are those of civil society. Just as regulation maintains transparency and prevents abuses in government, so it can in interventionist research. But the regulation of civic life is viewed with justified suspicion by democracies, and regulation raises comparable problems for humanistic research. Indeed, legal historian Philip Hamburger has made the case that federal human subjects regulations violate the First Amendment, inasmuch as they place a prior restraint upon speech, requiring that it be licensed before the fact. His argument is strongest in the case of research in which speech is the primary method.

The risks of humanistic research constitute a special case of the risks inherent in civil society. But just as we protect the freedoms of speech and association in the interest of democracy, so we should protect them in the interest of creating public knowledge. In civic life, social risks are managed not through regulation but through social control and public opinion. By the same token, social control, professional socialization, and peer review have long interacted to critique and improve the ethical conduct of humanistic research. The consensus emerging from these processes is formalized in disciplinary codes of ethics (such as those our own Society has adopted for our field), lapses from which are subject to serious social and professional sanctions.

While appreciating the concern displayed for privacy rights, the American Folklore Society strongly rejects the appropriateness of HIPAA-style standards for cultural and social research. Folklorists have historically studied marginalized or disempowered populations: minorities, women, workers, and rural people. Over our century and a half of disciplinary existence, we have learned to stop treating people as generic members of a social category or as passive "tradition-bearers." Individuals typically want credit for their knowledge, experience, and creativity. It would be absurd to strip individual identifiers from a study of Plácido Domingo's vocal technique or an intellectual history of the counterinsurgency strategy in the Iraq war. It is equally nonsensical to strip such identifiers from a study of gospel singers or grassroots activists: no intellectual sense can be made of their practices without the surrounding context. More importantly, to demand the suppression of individual identities denies these people the dignity and respect conferred on more powerful individuals.

To be sure, anonymity is often necessary: some research topics are sensitive or dangerous and many actors are vulnerable in their local contexts. Ethnographic researchers are trained to make case-appropriate judgments and to hold frank discussions with their community collaborators (i.e. research subjects) about the positive and negative ramifications of publicity.

There is another point regarding the concern about existing research data being turned to secondary purposes to which the subjects had not consented (4.v.). Again, the nature of humanistic data is different. We don't destroy the plays of Shakespeare because they have already been studied. We understand that these are cultural texts with ongoing power to speak to us, and are not exhausted by a single set of questions asked of them in a given moment. In the same way, the narratives recorded by oral historians and the performances documented by folklorists are cultural texts, primary documents of richness and complexity inaccessible to a single observer or historical perspective. Almost always, these texts are not pure artifacts of the research process itself, but have existed in multiple performances and venues long before that research began. Even the content of a directed interview has often been long-rehearsed in more intimate community conversations: sometimes we find that informants have just been waiting for an occasion to speak to a broader audience. Both researchers and interviewees/practitioners typically assume that their testimony or practices are important in their own right rather than merely as contributions to a specific research project. This mutual recognition is part of what is considered in the ongoing negotiation of consent, identification, and appropriate venues for publication.

We believe strongly that IRBs and DHHS need to conserve their resources to concentrate on the serious abuses possible in interventionist and particularly in biomedical research. We see the value of university-based peer review of interactive and interpretive research involving living people; such review can be especially useful with the growth of interdisciplinary projects where researchers may not have been trained in codes of ethics. But, as the AAA statement insists, such review needs to operate according to discipline-specific and locally-specific standards if it is not to do more harm than good, both to the quality of the knowledge produced and to the well-being of the individuals and communities involved.

We applaud DHHS and OSTP for the careful thought put into the Advance Notice of Proposed Rulemaking, and look forward to seeing the draft revised regulations.

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