Oft-studied community sets its own research ethics standards

You may remember the San people from the 1980s movie titled “The Gods Must Be Crazy.” That effort wasn’t the first time this community was under scrutiny. As a recent article in the online publication Quartz notes, the group has been studied and photographed for a long time, and “The traditional knowledge and culture of the world’s oldest population has fascinated scientists, with little benefit for themselves.” The San community recently developed a code of ethics designed to reign in unwarranted intrusion and exploitation related to research. “The codes is based on an understanding of respect, honesty, justice and care. The council also plans to establish a review panel of local San, along with a few experts, to vet research proposals.” Please click on the link above to read the full article.

This story reminds IRB Blog Central editors of some of the concerns facing Native American populations in the US. Tribal representatives at a recent conference with us repeatedly mentioned that they have their own requirements and review processes for research, even for studies reviewed by central IRBs. At least one tribe is to participate in an upcoming research project for which the UAMS IRB will be the central IRB. We will need to devise ways of incorporating the tribe’s requirements into our review.