Saturday, July 26, 2008

Report from SACHRP, Part 3: When Consent Means Censorship

A third item of interest from this month's SACHRP meeting concerns rules about research on Indian reservations.

According to a handout provided at the meeting, in March 2008, Dr. Francine Romero--an epidemiologist and former member of SACHRP--proposed that the Common Rule be amended to specify that

For human subject research to be conducted wtihin the jurisdiction(s) of federally recognized American Indian or Alaska native (AIAN) Tribal government(s), the IRB shall require documentation of explicit Tribal approval for the research. This approval shall come from the Tribal Council or other agency of the Tribal government to whom such authority has been delegated by the Council.

The Subpart A Subcommittee decided that while amending the Common Rule was neither "efficacious, expeditious, nor appropriate," it apparently thought the overall idea a good one, and recommended that OHRP develop guidance to assure that researchers get permission from Tribal governments to do research within their jurisdiction. In the general discussion, various SACHRP members and other federal officials debated whether OHRP was the right office to handle the task, and they modified the recommendation to include other HHS agencies.

As I pointed out during the public comment period, similar rules in Canada have deterred historians from including First Nations Canadians in their research, and give Band Councils veto power over who in their communities gets to talk with a university researcher. And in California, a Tribal government used an IRB to suppress research on labor conditions in casinos. But at no point during the SACHRP discussion did anyone consider the effect the recommendation would have on social science research.

Since 1966, IRB policies have been determined by bodies dominated by medical researchers, and SACHRP is just the latest in a long list. However much medical researchers and administrators may want the trust and respect of social researchers, they simply cannot keep in mind the rights and responsibilities of social scientists when something like this comes up. For medical researchers, it seems, more consent is always better, and they forget that one person's consent is another's censorship.

In related news, today's New York Times reports that the U.S. military has suppressed photographs of American casualties in Iraq by insisting that photojournalists obtain written consent from the troops they photograph:

New embed rules were adopted in the spring of 2007 that required written permission from wounded soldiers before their image could be used, a near impossibility in the case of badly wounded soldiers, journalists say . . . Two New York Times journalists were disembedded in January 2007 after the paper published a photo of a mortally wounded soldier. Though the soldier was shot through the head and died hours after the photo was taken, Lt. Gen. Raymond T. Odierno argued that The Times had broken embed rules by not getting written permission from the soldier.

[Michael Kamber and Tim Arango, "4,000 U.S. Deaths, and Just a Handful of Images," New York Times, 26 July 2008]

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