1. Consent and preserving the rights of research participants:
About Chris Kelty’s (03/15/07 this site) suggestive comparisons between copyright and informed consent, and particularly the notion that both “actually diminish rights of subjects regarding the control of information, rather than protecting them”: remember that, even though the IRB system is federal (with a central Office of Human Research Protections apparently coordinating the application of regulations), IRBs are local and control their own procedures. As far as I know, IRB researchers agree that local IRB practice “varies”. The point here is that there is no standard IRB consent form.
My institution’s IRB takes a minimalist approach. Our “Standard Adult Consent” form (which, like many other universities’ IRB materials, is available online) is two pages long, the second page devoted simply to contact information. The main page has a place in which the researcher needs to insert a straightforward (non-jargon) description of the project. Apart from this researcher-generated text, the consent form asserts that the signer affirms only that s/he has been informed about what s/he will do as a research participant. The form includes the mandated language (http://www.hhs.gov/ohrp/humansubjects/assurance/consentckls.htm) that participation is voluntary and that consent can be withdrawn and participation discontinued at any time without penalty. But it adds that “By signing this agreement, I do not waive any legal rights or release Princeton University, its agents, or you from liability for negligence”.
This minimalist approach lives up to regulatory requirements and also affirms a best-case interpretation of what the regulations aimed for: it is clearly aimed to avoid creating an institutional shelter.
In contrast, for example—just to use Chris’s institution—the Rice “Consent to Participate” form simply provides the required assurances about the voluntary nature of participation and rights to withdraw without penalties.
It might be interesting to compare other university forms: so folks, what rights does your local IRB consent form protect or not protect?
2. Disciplinary diversity in the ‘researcher relation’ and its ethics:
I agree completely with Tom Strong’s (03/17/07 this site) sense of the contradiction between naming or authorship (associated with IPR claims and their related local values, like the Papua New Guinean ones he mentions) and confidentiality (associated with both ethnographic ethics and IRB emphases). IRBs presume one kind of researcher/researched relation derived from medical research, in which confidentiality makes sense since participants are vulnerable “subjects”. They are brought into lab settings within which–for the resulting data to be usable–information cannot be shared but must be carefully controlled by the reseacher.
But IRBs these days regulate a very wide variety of fields whose methodologies involve diverse research relations. Fields whose reseach relations tend to be collaborative–involving, for example, the sharing of information and other colleague-like assumptions about intellectual and social agency–are closer to the model that Papua New Guineans—and lmichael’ (03/17/07 this site) Amazonian field communities—prefer. They’re quite different from the medical model of the research relation.
Oral History ethics are perhaps the most elaborate in treating “narrators” as the authors of their narratives: going way beyond even recent anthropological practice. The OH convention is for narrators to hold copyright to their own words and to specify who (if anyone) may have access to the transcripts and recordings.
In this consent discussion, John McCreery (03/18/07 this site) invokes “the spirit of free choice”—and the journalist’s allowing on- or off-record commentary. This position appears consistent with the Belmont principle of “respect” (foundational to the regulations that IRBs enforce). Is it? Why does such a stance tend not to make sense to your average IRB?
My answer is that we’re dealing with incommensurable perspectives on the research relation. John’s (or Tom’s or Michael’s or my, etc.) interlocutors are construed (and construe themselves) as autonomous agents, whereas—following the medical model and its frightening worst cases—IRBs are responsible for “human subjects”: persons construed as “vulnerable” and in need of protection. What is more, bureaucratic rationality demands a disinterested consistency. From that central(izing) vantage, our divergent ethical positions don’t sound principled (they are not heard as issuing from different ethical stances) but simply self-interested (unenlightened, irrational).
Very like audit culture (using Marilyn Strathern’s sense of this term), bureaucratic ethics culture defines the dominant language of best practices. It demands that diverse disciplinary research relations be translated, so to speak, into one ethics language. The burden of translation is, as things presently stand, entirely ours.
As Michael Brown’s story suggests, that doesn’t necessarily mean a surrender of our principles…
[UPDATE: Added links for comments, and gave LMichael credit for a comment previously attributed to Michael Brown. – Ed.]