Yesterday I wrote about science discourse and the framing of Native Americans as anti-progressive. Often this occurs within the context of controversies that have the effect of cleaving one side from another: us versus them, insiders versus outsiders.
Indian interests are positioned as irrational and anti-scientific in most scientific conflicts. In the Kennewick Man lawsuit that bisected tribal and scientists’ interests, spokesman Armand Minthorn was derided for letting cultural views prevail over empirical ones. After he outlined his position for one reporter, she said on camera, “Science doesn’t matter to them.” Minthorn rejoined that “we know what happened 10,000 years ago. I know what happened 10,000 years ago at home along the Columbia River, because my teachings from my older people tell me how life was 10,000 years ago. And the scientists cannot accept the fact that just because it’s not written down in a book, it’s not fact. It’s fact to me, because I live it every day.”
The Umatillas have been assertive about publicly stating their views and you can find a statement by Minthorn on the tribal website at http://www.umatilla.nsn.us/kman3.html
In the Kennewick case, the court victory was heralded as “a win for all science.” But not so with the case of the blood samples extracted from members of Arizona’s Havasupai.
Earlier this year the Havasupai successfully sued Arizona State University for using blood samples for DNA research. The International Herald Tribune reported that university researchers began taking blood samples in 1990, when tribal members were told their blood would help reveal genetic clues to diabetes. According to the news report, donors “learned that their blood samples had been used to study many other things, including mental illness and theories of the tribe’s geographical origins that contradict their traditional stories.”
Tribal members said this was not disclosed to them.
“The case raised the question of whether scientists had taken advantage of a vulnerable population, and it created an image problem for a university eager to cast itself as a center for American Indian studies,” the Tribune reported.
“I’m not against scientific research,” said Carletta Tilousi, 39, a member of the Havasupai tribal council. “I just want it to be done right. They used our blood for all these studies, people got degrees and grants, and they never asked our permission.”
Still, one geneticist defended her actions as ethical. Therese Markow told the Tribune, “I was doing good science.”
The scientist’s quote echoes a refrain heard frequently since publication of Rebecca Skloot’s book on Henrietta Lacks, whose cells became the sine qua non of cancer research. Lacks’ cells, known as HeLa cells, fueled cancer (and other) research and generated more than 60,000 scientific studies. In addition to their contribution to scientific knowledge, the HeLa cells became a profitable venture and today you can buy a vial for about $250. Lacks’ family, needless to say, has never been compensated for such ventures. You can keep updated on Skloot’s blog at http://rebeccaskloot.com/culturedish/
Today I did a quick experiment: I searched the major world publications on a news website to see how many articles in the last year ran a story on the Havasupai. I did a gross research for “blood and Havasupai” and found 10 articles. Then I searched the same website for stories over the last year that featured “Henrietta Lacks and cell.” The search yielded 90 articles—nine times as many as the Havasupai.
It’s not surprising that the Henrietta Lacks story has generated a lot of buzz, particularly in light of Rebecca Skloot’s best-selling book. Still, the Havasupai lawsuit has been reported quietly compared with the trumpeting of coverage engendered by Skloot’s book.