Responses to comments (continued!)

In my earlier post (“Responses to comments…”), part of my responses somehow disappeared. Here’s the missing bit (and sorry for my post-incompetence!):

#3 on inconsistencies and a sneaky plan to heighten the contradictions: John McCreery raises an excellent question. It would be nice if consistency ruled: all researchers should face the same constraints, but they don’t. The irony here is that consistency is one of the core values of bureaucratic ethics management. Consistency is a recurrent refrain on many local IRBs (“…well, if we allow you guys to do away with written informed consent, then we’d have to allow everyone to…”) and it is a key theme at the national level as well.

Ironies aside, as I understand it, there’s an important, fatal flaw in your deliciously sneaky consistency argument: market researchers don’t depend on federal funds to do their work.

Strictly speaking, IRB oversight is only required for institutions (like most universities and colleges) that accept federal research funds. The federal human subject protections regulations (45 Code of Federal Regulations, Pt. 46) were nicknamed “the Common Rule” in 1991 when 17 federal agencies (like NIH) that fund human subjects research all signed on. Rick Shweder’s contribution to our November 2006 American Ethnologist Forum explains that universities and other institutions that accept federal research funds cannot get those funds unless they sign an “assurance” with the relevant funding agencies, or a general Federal Wide Assurance (FWA): documents that obligate them to have one or more local IRBs to review their employees’ research proposals.

Now, as Shweder’s article also explains, university and college IRBs only need to promise to review federally funded research. However, it seems that most of our institutions have gone beyond this minimum requirement and have checked a box on the FWA form that obligates them to review all research, not just federally funded research! (Folks all over the place are looking in to this situation at their institutions: I recommend that you make friends with someone in your institution’s counsel’s office and look in to it too!) In any case, over the past five or six years of IRB “hypervigilance” (the situation that prompted the AE Forum) boards have been jittery and have tended to review all research regardless of how it is funded, regardless of whether their FWA obligates them to do so or not.

Responding to John’s question about the existence of guidelines parallel to those on which IRBs are founded: I can think of one that, while still being at least partially academic, is interesting nonetheless. Check out the National Academy of Sciences “On Being a Scientist” booklet (available online at http://bob.nap.edu/readingroom/books/obas/ ), which concerns science research ethics very generally. This is another example of the inconsistencies mentioned above: unlike the IRB oversight of research with human participants, these general (mostly non-human participant research) guidelines are completely voluntary even tho the research is very likely to be federally funded!

#4 on the roots of the IRB problems in disciplinary ‘cultures of research’: Another terrific question! My responses to other folks’ questions contain bits and pieces of an answer to this one (as does my AE Forum paper). But a fuller response would be the paper I mention in my comment on #5 (below). My contribution to the Cornell conference was a paper entitled “Comparative ‘Research’: A Modest Proposal Concerning the Regulatory Object” (which I’ll be ready to make available in a few weeks). In my view, the problems go way, way beyond the IRB context and derive exactly from the “cultures of research” of which IRB members and the rest of us are part. My own long-term research has been all about disciplinarity and interdisciplinarity—that is, engagements like those cross-disciplinary discussions concerning methodology you mention. As I explained in my AE paper, IRB discourse is just one of my “fieldsites” (which include other places in which disciplinary practitioners bump up against one another, as well as fractious intra-disciplinary moments of ethical crisis). But it’s a fieldsite in which everyone is implicated and consequently of great interest. My AE paper unpacks the Common Rule “definition of research” a bit; and it also begins to address exactly the issues you identify concerning how ethnographic fieldwork is understood by folks from other disciplines (and vice versa). Check it out.

#5 on the relationship between IRB and intellectual property issues: If Michael Brown is still out there, what do you think about the relationship between IRB surveillance and the management of intellectual property contradictions?

Different institutional mechanisms are at play with respect to intellectual property and IRB controversies. For one thing, the IRB system exists outside of (or prior to) legal mechanisms for dealing with accusations about misrepresentation (libel laws), privacy, and the like. This is a huge issue: several of us refer to it in the AE Forum (and anyone interested in following this might also check outhttp://irbinfo.blogspot.com/ and follow references to Hamburger’s Supreme Court Review paper). In a paper that I wrote for a Cornell Law School-hosted conference on “Bureaucracies of Virtue”, I suggested that we’d be better off (and our informants no worse off) if our work were held to account in the same ways that the work of journalists and other writers are. As I understand the current situation, IRB reviews do not protect us or our institutions from lawsuits (that is, whether or not consent forms are involved, IRB reviews don’t prevent our interlocutors from suing us). As things stand, many critics see IRB reviews as constituting censorship-like prior review (arguably a kind of “prior restraint”, something that the First Amendment protects against).

Rena

I’m Professor of Anthropology at Princeton University. I’ve blogged here about the disconnection between ethnographic field ethics and ethics regulation compliance, and advocated hither and ton for humanistic social studies in regulatory ethics contexts. Otherwise, I’ve done fieldwork in Highland Papua New Guinea (sociality, gender, exchange, historicity) and on knowledge cultures in the US academy (anthropology, historiography, sociology, experimental psychology).

5 thoughts on “Responses to comments (continued!)

  1. The relationship between IRBs and IPR is something I’ve thought a great deal about, and maybe a few other people, like Michael have, but generally speaking no one is paying attention to the bizarre and troubling overlaps that emerge in between these two regimes. On the one hand IPR is far more expansive, and because it is a federal statutory regime, and not a regulatory one, it tends to be more, um, egalitarian, in the sense of making everyone suffer regardless of where their money comes from.

    One issue is the increasing similarity, at a formal level, between the informed consent form and the copyright license–especiallly in cases primarily covering the use of personal information. Both increasingly employ arcane “boilerplate” legalese, both attempt to control the reproduction, circulation and derivative uses of information, both are troubled by new technologies such as the internet, and both of them are frequently signed by people without an airy clue what they mean.

    Another issue, brought to light by Free Software and related practices, is that informed consent, like standard copyright, actually diminish rights of subjects regarding the control of information, rather than protecting them. In the case of copyright, the transfer of ownership (think, signing an author agreement) is a way of transferring control away from individuals and to institutions; in the case of consent forms, the problem of downstream/derivate uses is often uncontrolled, so that information that is collected for one purpose is often used for other purposes that the consentor may or may not have agreed to. But because informed consent starts to look much like a transfer of property rights, but cannot be discussed as such (because it is legally murky, if not meaningless to speak of the ownership of one’s own private information or informationally abstracted body, i.e. genetic sequences and fMRI scans), it is impossible for IRBs to imagine how such permanent control on the part of individuals might be constructed, short of literally bringing them into the research enterprise as partners– which may actually be the solution, but then they wouldn’t be research subjects, would they?

  2. Brilliant observations Dr. Kelty!

    Are consent/copyright both procedures of cutting the network, so to speak? Of rendering the relevant relational milieu legible to an institutional gaze?

    I am curious about this problem in relation to a specific conundrum: naming and confidentiality. My sense is that there is a conventional understanding that ethnographic knowledge and products will ensure confidentiality and even anonymity.

    Yet, one goal of IPR as applied to indigenous knowledges may be to ensure that the sources of knowledge are seen in the products of it. Where consent requires confidentiality, how would such recognition occur?

    For example, the Papua New Guineans with which I work would find the idea that their names would not be attached to anything they tell me for my research is absurd and offensive. A big motivation for contributing to my research would be to expand their names or their fame and renown.

    Your thoughts here highlight and return us to Michael’s excellent suggestion that anthropologists are especially entangled in these conundrums because of the claims of the people we (often) work with. Who ‘owns’ our data? Do the presuppositions involved in consent procedures of certain sorts run up against an ethic of openess with respect to subjects of research, such as indigenous folks, who may see that there is more at stake in the control of knowledge than just one person’s personal discomfort.

  3. Strong — I’ve encountered a similar issue in the Amazon Basin where I work: peope actively *want* to be associated by name with the products of the research process. Here’s how I handled it: I explained to the people in the communities in which I work that my superiors in my land (i.e. the IRB) were concerned about the use of personal names (and I explained as best I could why). Then I asked the people I was working with (in two different field sites) what I should say to my superiors about the issue of names. And they responded that I should tell my superiors not to worry about anonymity but, in essence, about giving credit where credit is due. When I did my IRB paperwork, I included mention of the community member’s opinions on the issue of anonymity, and explained why I did not wish to make anonymity a central feature of data-handling and storage, and of the publication of results. The IRB did not balk at this.

    Two observations: 1) I typically make one or more `pre-research’ trips to talk with community members about research projects, but not to collect data. So I use these trips to negotiate a number of issues, some of them IRB-related like this, before I start collecting data and need to go through the IRB process. 2) I get the impression that the IRB I deal with is not as rigid as some others that people are talking about, so this may not end up working for you. But it might be worth a shot.

  4. In the spirit of free choice, isn’t the correct procedure to offer the local collaborator the option of either anonymity and confidentiality or a name and publicity? The ethical dilemmas involved are neither more nor less than those involved in journalists’ allowing politicians to speak either on or off the record, to be named or cited anonymously, the old “Highly placed sources tell us….”

    The marketing researchers whom I interviewed for my book on Japanese consumer behavior were, like Strong’s Melanesians, delighted to be named and get credit for their work. It would have been churlish not to.

  5. these comments are exactly on target. The issues of confidentiality/anonymity and the “credit where credit is due” are precisely the point of overlap between IRB and IP. In the US, whenever I write, speak into a recorder, or do anything that fixes my expressions in a tangible medium, I am automatically granted copyright over those expressions–which means I have legal control over their dispensation. While we are being extra-ordinarily overconscious (through our IRB overlords) about “consent”– we are also being incredibly cavalier about our rights to expropriate those words absent a copyright license. Expand the research aross legal jursidictions and the problem only ramifies. Now in most cases, an interview, for instance, can be consider a “joint” production, owned by both parties, but ethically speaking this just fudges the issue, which is that we consider (in most, but not all cases) that our informants are the owners and originators of their expressions–if not theoretically (they may speak for the community in all the sundry ways Michael B. has detailed in his work, and not as individuals per se), then at least politically in the sense that we might (usually) want them to get the credit for their ideas in the spirit of “collaboration.”

    To make things worse, many IRB’s assume different definitions of confidentiality/anonymity. At my institution, anonymous means that I as a researcher do not know who my subjects are (i.e. a randomized clinical trial in which I know “samples” only by number). Such a situation is obviously impossible in fieldwork, and so I fail the anonymity test. By the same token they take confidential to mean that none of the information I collect will ever be revealed outside of the research setting (assuming, in clinical terms, that the data will be so abstracted from the people as to render specific, or even general, attribution unnecessary). I fail on that count too, since I 1) need to make the information public in order to write at all and 2) give my informants the choice of being either anonymous or not. Both definitions also make me run afoul of IP law, since 1) I can’t “anonymize” someone’s expressions without owning them and 2) I have no right to distribute or make derivative works of such information, nor to keep them secret– I have no rights over them at all… the copyright holder does. Alas…

    I had to think through many of these issues to do this project. As such I have a folder full of forms that are both consent forms and copyright licenses/ terms of use… which I had to invent for the purpose…

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