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So I think yall know my big research paper last semester was on the history of eugenics, the development of birth control and forced sterilization in the US. It was a project prompted by the news in 2020 of forced sterilizations taking place in an ICE detention center in Georgia.
My big research project *this* semester is in a human research course and I wanted to write about philosophical differences between indigenous knowledge/science vs Euro-American conceptions (avoiding the term “western” here on purpose, think about it). But—
in looking for concrete evidence, I got stuck on an ASU research study on the Havasupai tribe in Arizona which grossly violated informed consent and caused outrage and immense pain to the community. All the “neutral” science articles I read revealed a whole lot of political bias,
utter lack of respect for their traditions/knowledge & racism, and I got PISSED & COULDNT LEAVE IT. The tribe is described as being overly sensitive, blocking the progress of science, using casino money for political purposes (I guess protecting your community is political & bad)
—etc. Essentially, they’re dismissive, harmful, and sometimes plainly untrue testimonials rooted in a deep-seated belief in their logical supremacy. This response is really jarring when you look at the way the study affected tribal members. For many, it was incredibly traumatic.
(I’m just gonna keep going because this is helping me outline in my brain and hopefully at least a couple people will find this interesting.)
In 1989, Supai members approached an ASU researcher who they’d cultivated a mutually respectful relationship with over time. They were suffering from skyrocketing rates of diabetes and wanted to know if he could help. He was very interested in finding a genetic connection, and—
immediately invited a geneticist at the university to lead the study with him. SHE wanted to study mental health, and was particularly interested in schizophrenia, because apparently (where the data came from is totally unclear), the tribe had high rates of this as well.
Researcher 1 didn’t think the tribe would be interested in that. So, what does Resesrcher 2 do? She pursues her interests anyway. Whether 1 knew, or what the extent of his knowledge was, is shadowy. Their project ends up looking into diabetes, schizophrenia, and depression.
It’s worth noting that they couldn’t find a genetic connection to any of these lol. Additionally they look into inbreeding and migration patterns, both of which are suuuper culturally insensitive for a few reasons. Two assistants to Researcher 2 recall some real sus instructions.
One said that he was told to lie to tribal leaders about his schizophrenia research, and to instead communicate he was looking at diabetes. Another poured over tribal medical records without consent LITERALLY IN THE DEAD OF NIGHT after the clinic was closed!
(SIDEBAR—both these guys end up getting convicted for drug/alcohol related offenses around the period this transformed into 2 lawsuits. Which is suspiciously convenient considering they provided the most damaging testimonials against Researcher 2, by far. Very sus to me.)
The standards for consent forms during the 90s were not as strict as they are now (thanks to this incident) but still violated existing guidelines at the university. They were also vague and did not give any specifics about what blood samples would be used for. When approached—
—by researchers to participate, they were told it was for a diabetes study. To be fair, some of these ASU people did really think that that’s all it was. That’s what Researcher 1 claims. Regardless, it was incorrect information that clearly violated informed consent.
But let’s fast-forward to 2003. No genetic connection has been found but still no one has bothered to fill the tribe in on this update. While this study is basically dropped, other researchers start to use Havasupai DNA sitting in the lab to conduct their own research.
The ASU review board was somehow fine with this. They didn’t think consent needed to be regathered for new studies. But during a dissertation presentation, a grad student using Supai DNA starts his lecture and a tribal member & student happens to be in the audience.
She also happened to have participated in the diabetes project! She flashes back to that study, and realizes this might be the same blood being used. She stands up and asks if he got permission from the tribe to use their genetic material and he says no.
This is long as hell I’m sleepy. If you read this far and want me to keep going let me KNOW otherwise it might drop off here 
https://abs.twimg.com/emoji/v2/... draggable="false" alt="😭" title="Laut schreiendes Gesicht" aria-label="Emoji: Laut schreiendes Gesicht">
I refuse to finish this thread https://abs.twimg.com/emoji/v2/... draggable="false" alt="😭" title="Laut schreiendes Gesicht" aria-label="Emoji: Laut schreiendes Gesicht"> but long story short I ended up comparing the use/misuse of genetic materials from marginalized groups (in this case, the Tuskegee study, and with HeLa cells) to extractivism and it was fire. V proud of my brain she starting to get a lil thicc https://abs.twimg.com/emoji/v2/... draggable="false" alt="🥵" title="Hot face" aria-label="Emoji: Hot face">
