A highlight from What Does It Mean to Give Away Our DNA?

The Experiment


Can you introduce yourself? Who are you and what do you do? So my name is Rene Bing. And I will introduce myself in Navajo as well, so when he began she had total initiative, Austria butchery pacini that should take on additional to then a dent in our shop. So I just told you my four clans in Navajo brene Bugatti says she thinks about her clans a lot. And not just in her Navajo world, but in her professional world, too. Because genetics, it's about relatives. It's about the future generation. She's a geneticist, and family really is everything to her. So when you hear someone say those clans to you, what goes through your mind? I'm thinking about how they are related to me. Yes, I have one biological mother, but I could have multiple mothers, which is my aunts. You know, nabo translation, they're like little moms. So in this initial introduction, you're sort of trying to see if you're blood related somehow. Is that right? Yeah, I wouldn't characterize it as blood, necessarily, 'cause I think blood is kind of really loaded term. And I wish it wasn't that way. I wanted to talk to Renee because being both Navajo and a geneticist is a pretty rare combination. The Navajo Nation actually banned genetic research from taking place at all on tribal lands. So Renee sits at the center of two worlds that have been at odds with each other for a long time. But recently, the U.S. government has tried to change that. They conducted these engagement meetings in the city, and this was in Denver. In 2019, government officials invited Native Americans to a meeting in a federal building in downtown Denver, to essentially make a pitch to them. For a new ambitious genetic research program. This was obviously right up Renee's alley, so she decided to go. I knew there was tribal leaders there. From different tribes, and she watched the scene unfold. Tribal leaders sat at a rectangular conference table, facing each other as a group of white women, dressed in business casual, began their presentation. The all of us research program is calling on 1 million people to join us as we try to change the future of health. The program is called all of us. What lies inside all of us is more than data. It's life. They've aired quite a few PSAs on TV. What they're trying to do is recruit people to take part in this huge study from the national Institutes of health. They said the goal of all of us is to create healthcare that is individualized for each person. Instead of one size fits all. By gathering health data from 1 million people, our country's best researchers will be able to develop treatments that are as unique and complex as we are. To accomplish this, they want our family health history, our geographic location, and samples of our spit, our urine, and our blood. To create a giant genetic database. And what we find there will unlock mysteries, heal the sick and eradicate disease. I think it sounds like a really great idea, right? You know, really catering healthcare and medicine to an individual because I know I'm not like anybody else. It is important for minorities to be a part of this, or we will again be left with medications that are created for really other populations. Why not? You know, why not participate? Why not be part of it? They never really said this is a biobank. This is like a place where things are going to be stored by our specimens and data. It was very superficial language. And I still don't think title leaders understood what they were doing. Then the presentation was over. Somebody did ask for a more clarification. They basically said, well, it's on the website, and Houston link. This meeting was part of a big outreach campaign by the NIH. They worked with many native leaders and researchers to try and connect with their communities around the country in a meaningful way. But according to Renee, tribal leaders at this particular session in Denver still did not seem like they were on board. They kind of were like, okay, this program seems okay, but I don't know. I just don't understand it fully and they just kind of were like, okay, whatever I do

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