"Did you have permission?" -- informed consent for research on blood samples

“Did you have permission,” [Carletta Tilousi] asked during the question period, “to use Havasupai blood for your research?”

Arizona State University didn't, and so they've settled with the Havasupai Indians to the tune of $700,000, a return of all remaining blood samples, and a banishment order that prevents all University employees from entering the reservation (NYT).

The blood sample donors had consented to tests on their biological material that would result in insights to a high prevalence of diabetes in the tribe. In exchange, they were supposed to receive nutrition classes and other assistance to help combat the disease among tribe members. The lead genetics researcher started using the blood for other, completely unrelated studies -- some two dozen of them. And several years later, a tribe member who was a student at Arizona State was casually invited to attend a dissertation that used blood samples that the school had stored away for years in a deep freeze. What does informed consent mean when your blood and DNA are spiritually infused with meaning? When the results of the research conflict with your tribe's origin stories, and the contradiction is seen as a hurtful insult to the tribe's storytellers?

Western scientists have disregarded Indian beliefs and traditions for years. The disconnect between how archaeologists and Indians seek to treat a body they've uncovered has been a huge, continual issue in North American archaeology. Until shockingly recently, there was no federal law that required archaeologists to treat an Indian grave any differently from, say, a Neanderthal burial or a Celtic bog body, despite Indian tradition that -- to generalize terribly -- holds the most distant and ancient ancestors as close as a living sibling. Though some archaeologists might have had more scruples than the law and the scientific method dictated, for most of the past few centuries there was little, if any, regard for the Indians' perspective in the human remains and artifacts that were removed from homelands and reservations in the name of scholarship and science.

It hasn't helped that the Peabody, Smithsonian, and other institutions still have literally drawers of unreturned Indian body parts collected from all over the continent, yet to be repatriated.

Nowadays, trained academic archaeologists do the right thing and immediately halt a dig and call in the Indians (er, at least, immediately after they call the police) if they find a human body at a North American site. It's the law, too: 25 U.S.C. 3001-3013 (NAGPRA). But my point, and I do have one, is that scholars and scientists aren't going to make themselves look too good to Indians if they can't be more culturally sensitive. The principles that led to NAGPRA don't suddenly end at burials and artifacts.

Even with NAGPRA, a lot of tribes won't allow archaeological digs on their territory, because of continued disrespect by scholars for boundaries, both physical and cultural. And lookit: the Havasupai Indians have done the same thing with Arizona State University now. And everybody loses! The tribe, and likely other tribes as well, lose the future benefits of medical research on their health. The school, because it couldn't be bothered to send a person and some paperwork to the tribe to expand the scope of their permission to use the samples, loses goodwill. The scientific community at large loses, because it will now find it more time-consuming and costly to try to do similar work with other tribes.

Remember Kennewick Man? A huge dust-up over a body that was scientifically too old to be a Pacific Northwest Indian, but geographically too close to five current tribes for them to culturally allow scholars to desecrate his bones with tests, or at least not without an expensive court battle. The court battles aren't going to get any less expensive until scientists show more respect to the tribes. If they want less of a fight today, then we -- as in, the non-Indian settlers of North America -- shouldn't have given out smallpox blankets back in the day. As it stands now, we -- as in, Western-thinking people -- just need to give Indians more time and more respect when it comes to working out these informed consent deals for what we consider chemical residue, and what Indians consider spiritually charged ancestor parts.

And taking time to work things out sensitively is OK. Kennewick Man isn't going anywhere.