Baratunde continues his journey to discover how we can embed more justice into the data driving our increasingly automated lives and focuses on the most intimate data there is: our DNA. He talks with Krystal Tsosie, an indigenous geneticist and bioethicist who fights for data sovereignty and the rights of indigenous peoples to have agency over their personhood and knowledge.
- PERSONALLY REFLECT
What’s your data worth?
Ask yourself, “how much is my data privacy worth to me, and how do I feel about non consensual surveillance based on my data?” Now add in the element of genetic information. How would you feel if any of your biological kin donated genetic information that was tied to information about you that can be bought and sold?
- BECOME INFORMED
Learn about non consensual data collection
Read this NY Times article about Indigenous tribes in the Amazon who felt “duped, lied to, exploited” when they realized their donated blood samples were being sold for $75 a vial while the medicines they were promised in exchange never arrived. Or learn about Henrietta Lacks, a Black woman whose cervical cancer cells (“HeLa”) changed the field of biology and have been commodified by laboratories, but without the knowledge of her or her family. Now let’s make it more personal. Find out what Big Tech knows about you with some of the suggestions in this article.
- PUBLICLY PARTICIPATE
Support ethical data practices
Empower science led by Indigenous scientists working with tribal communities to ensure that the benefits of biomedicine and public health benefit Indigenous peoples. Consider making a donation to the Native BioData Consortium. And help protect yourself and slow the market for selling our data by installing the Global Privacy Control. This is a feature of certain web browsers that lets you signal to a site not to trade information about you, and it’s backed by law!
Baratunde Thurston 0:02
Welcome to How to Citizen with Baratunde, a podcast that reimagines citizen as a verb, not a legal status. This season is all about tech, and how it can bring us together instead of tearing us apart. We're bringing you the people using technology for so much more than revenue and user growth; they're using it to help us citizen.
Today, we're continuing our conversation about data. Last time with Kasia, we looked at the way data scientists categorize and use data to make algorithms and other technologies. The hope is, if the data set used is properly labeled and vetted, the better the tech eventually becomes; and we can make tools that are smarter, and more importantly, more equitable.
Kasia Chmielinski 0:51
...And the algorithm comes out the end, and there's a decision that's made: you get the loan, you didn't get the loan. The algorithm recognizes your speech, doesn't recognize your speech, sees you, doesn't see you. People think, "oh, just change the algorithm." Um, no, you have to go all the way back to the beginning.
Baratunde Thurston 1:07
Kasia's right: we can't just change the algorithm, we have to go further back and examine how data is collected in the first place. So, consider this episode, Data Justice: Part 2. Right now, it's possible that data is the most valuable resource on the planet. We use it to drive advertising, medical research, product development... its applications are endless. I'm not being hyperbolic. In terms of financial value, data currently beats out coal, oil: it's a commodity. That race to collect and monetize data has transformed into a veritable gold rush, or I guess I should say, Data Rush. Now, in its most-basic form, data is information, but, beyond that, it also helps define parts of who we are; and the smallest part of us, there's a market for that, too. Those tiny nuggets of data are precious and extremely personal. They live inside of us. I'm talking about genetic data, our genome that OG code. The business around genetic data is huge, and I don't mean just the 23andMe test you gave your family member last holiday season, I'm talking about a global industry worth billions of dollars. Biodata companies initially set out to make genetic testing approachable and affordable for the general public, and, at first, these little tubes, they were intended to assess our risk for genetic diseases; but, since then, they've really grown in popularity by offering us a window into our past, our geographical ancestry. When we spit in the tube and contribute to these datasets, yo, it feels revelatory and super scientific. I found out I was exactly 25.3% Nigerian, whoa! I even hosted a podcast, partnered with 23andMe, called Spit, you might have heard it. I got to talk to all kinds of people about how DNA can give us a new perspective on our relationships with each other, and with our health. At the time, I was thrilled to share these new ideas about an emerging science. It was a shiny and new way of looking at ourselves and our ancestors, but my guest today made me rethink everything.
Krystal Tsosie 3:38
Who does data ultimately benefit? If the data is not benefiting, the people, the individuals, the communities that provided that data, then who are we using it for, who are we protecting, and who are we uplifting at the cost of others' justice?
Baratunde Thurston 3:57
Krystal Tsosie is an indigenous geneticist and bio-ethicist at the Native BioData Consortium. She used to work in precision medicine, developing targeted therapies and treatments focused on cancer, but that experience led her to co-found the nonprofit consortium with other indigenous scientists. They built a network for native researchers to collaborate and protect their data heritage. To already-underserved and underrepresented peoples, data could be part of what gives these communities determination and agency over their own personhood and knowledge. Hello,
Krystal Tsosie 4:32
Baratunde Thurston 4:34
Welcome to How to Citizen.
Krystal Tsosie 4:35
Thank you so much for the kind invite.
Baratunde Thurston 4:37
You're so welcome. We're very excited to have you... Krystal joined me from Phoenix, Arizona, which is the ancestral homeland of the O'odham, Piipaash and Hohokam peoples. I joined her from Northeast Los Angeles, the homeland of the Tongva peoples, who are also known as the Kizh. I want to start with your TED Talk, called "DNA is Not Our Identity."
Archival (Krystal Tsosie) 4:59
I came here to Vanderbilt to pursue a Ph.D. in Genetics, and because of that, many people come up to me with this question in mind, "who am I?" Really, what they're asking is, "who am I in context with direct-to-consumer genetic test kit." Now, you're probably familiar with the concept, you spend $100 to $200, you spit a whole lot of saliva, more than you ever thought you could ever produce in your entire life, and you mail it out. 30 days later, you get a result, and that result is the percent estimation of your ancestral background...
Baratunde Thurston 5:34
First of all, nice work.
Archival (Krystal Tsosie) 5:37
...And that question of "who am I?" is actually mired in something else, because, according to Ancestry DNA, the number one question is, "why isn't my Native American ancestry not showing up?" Oh, okay. I only have 10 minutes, not 10 years, to unpack the assertiveness of that claim, or to tell you how dangerous it is to equate indigeneity in a false way...
Baratunde Thurston 6:04
I think a lot of us get the opposite message. You know, there's a lot of DNA testing. It's become like a party favor, in some ways, to define yourself by the data in your genetics and run these tests. So, people think the opposite. Actually, my DNA is my identity, that's what all the messaging says, so tell me why you say our DNA is not that.
Krystal Tsosie 6:27
Our genetics are only half of the story, and, in fact, when we talk about health inequities in communities of color, we really have to talk about the other structural barriers that relate to health and disease. So, for instance, with the COVID pandemic, there was a lot of press about how these rates were initially so much higher in tribal communities, such as my own; but those were not due to biological differences, they were due to things like our water rights being usurped from us, that we didn't have water to wash our hands, which is a key preventative measure for curbing viral transmission. Also, the fact that we have to drive hours one way just to get to a preventative health clinic. Technology is limiting our ability to detect these genetic differences across the genome. We don't have that much information yet, and to reduce all of these differences to just biology is just ignoring the beautiful diversity that's within all of our cultures worldwide. That's just talking about the health component; I haven't even gotten into the genetic and sexual components.
Baratunde Thurston 7:45
We'll get into that, because this idea that genetics, that we interpret them in a reductive and deterministic way--i.e., the genome tells us everything, that data set is us--you're rejecting that, and you're rejecting it in a health conversation, but as a Native American in particular, why are you rejecting this idea of genetic determinism for ancestry?
Krystal Tsosie 8:10
Well, let's think back just a few years ago...
Archival (News) 8:13
Hi, this is Elizabeth Warren. What do the facts say?
The facts suggests that you absolutely have a Native American ancestor in your pedigree.
Krystal Tsosie 8:20
Oh, my gosh, it feels like actually forever ago. A few years ago, when Elizabeth Warren announced that she had a DNA test that showed her supposed Native American ancestry, and... okay, let's unpack this a little bit further. Okay.
Baratunde Thurston 8:38
Let's go there. Let's get it. Let's go.
Krystal Tsosie 8:40
Yes, right now! Due to historical distrust, and I'm not talking about centuries ago or decades ago, I'm talking about just in the past few years, Native Americans in the U.S. have largely not contributed their genetic information to research or willingly to genetic ancestry tests. So, because of that, there's not that much information that links specific genetic factors to a particular U.S. Tribal Nation. So, where do they get that information from? They get it from openly-available biomarkers from large-scale diversity projects, about 20 years ago.
Archival (Bill Clinton) 9:21
We're here to celebrate the completion of the first survey of the entire human genome. Without a doubt, this is the most important, most wondrous map ever produced by humankind. Today's announcement represents more than just...
Krystal Tsosie 9:34
Particularly the Human Genome Diversity project, and, also, National Geographic Magazine did the Genographic Project.
Baratunde Thurston 9:42
Krystal Tsosie 9:42
These were two projects that were meant to sample worldwide populations, particularly indigenous peoples before we "disappeared," and I'm doing the air quotes. So, there's this huge rush to, sort of, sample as many indigenous peoples before we were wiped off the face of the planet due to colonial factors. Now, not curing the fact that our ways of life are disappearing, no, we wanted their genomes before we were dead and gone. This is the same rhetoric that colonists have been trying to cause our extinction for centuries, and this is just like the genetic version of that. So, what ended up happening is researchers went into remote communities in central-Amazon area, in Mexico, in Central America, and they collected biomarkers from indigenous peoples, and they promised that they were going to bring them medicines and deliver cures for conditions that besieged them. They took their blood, and did they uphold their promises? No. So, when you think about tests, like 23andMe, and Ancestry, they're using these openly-sourced biomarkers from disenfranchised, disempowered, exploited indigenous groups that are south of the U.S. border; and they're using these markers--and, also, Asian biomarkers, which is a totally different part of the world--to infer, statistically, statements about U.S. ancestry, forgetting the fact that every single indigenous group has their own distinct cultural and genetic histories. Those biomarkers that supposedly reified a story by Elizabeth Warren, those biomarkers don't really show anything except for the fact that she perhaps had a statistical relationship with one of maybe 50 people in this Mexico region of the globe. It has nothing to do with the answer she was trying to claim, and it's also horrible because Native American rights are tied to blood quantum rules. Blood quantum rules are usually derived by a person's lineage, like can they prove that they have a direct grandmother or a parent, or more even-distant ancestor who was a member of that community; but these are kinship structures derived from genealogy, not by blood. It's just a misnomer that they're called blood quantum rules, but let's remember the reason why blood quantum rules started: it was a means for diluting our rights and our claims to sovereign resources that are actually supposed to be given to us by treaty in exchange for our lands. By using these antiquated rules, we're diluting our rights to those claims, and then to reify it by these genetic ancestry tests, it's just horrible.
Baratunde Thurston 13:01
So, I want to pause and rewind for a few thoughts. The theft of blood is literally vampiric, right?
Krystal Tsosie 13:12
Baratunde Thurston 13:13
The idea of continuing to extract and exploit--which are fancy words for steal--is a continuation of colonial behavior, so it sounds to me like what you're describing is a vampiric genetic colonialism.
Krystal Tsosie 13:29
It's interesting that you use that term vampiric, because when these large-scale diversity projects were announced, global indigenous populations, at least 600 of them, actually went to the United Nations, and actually asked for the cessation of these studies. In particular, they called the Genographic Project a "vampire project," because it was akin to vampire bats coming in the middle of the night, stealing their blood, and then leaving when the morning came, and that's what it felt like.
Baratunde Thurston 14:05
What do indigenous people lose out on if they don't have their data in their own hands, if they don't have that data sovereignty?
Krystal Tsosie 14:14
Well, first of all, if they're not in charge of their data, and they don't have the same say in data decisions, then how are they going to call for accountability to ensure that they're able to benefit from the collection of their information. Then, also, we have to worry about whether or not DNA claims to indigeneity will be undermined. So, for instance, there's a number of scholars that are tracking descendants of Métis populations and First Nations Canada, people that claim to be members of tribal communities but really have no evidence, but are able to claim rights that should be only to indigenous peoples. What that effectively does is it undermines the strength of communities, because it's not like these rights to resources are unlimited.
Baratunde Thurston 15:09
Krystal Tsosie 15:10
It's very finite.
Baratunde Thurston 15:11
There's like a flip-side version of this with the one-drop rule in U.S. history about who's black, and that was used as a weapon to kind of exclude people from the resource of the majority population. "Well, you're not white, therefore, you go to the back of everything, every list." There's an irony in the modern times when we have so much language about inclusivity, and equity, and diversity, like the whole trifecta, that the resources of a colonial government will be used to determine membership in an indigenous community; and that, at the very heart of sovereignty, probably more than water or land, is self-definition, self-determination. So, if this outside authority, which you got mad reason not to trust already, now usurps your own membership rules based on questionable and certainly incomplete science... that's real messed up. That's where I landed. That's what all that built up to. That's just real messed up, Krystal.
Krystal Tsosie 16:14
No, the cruelest joke is that U.S. indigenous groups have taken the system that was meant to dilute us from our rights to resources, and now we have used that same system to define ourselves and even exclude others that should be part of our community. That is just intrinsic colonialism reflected upon ourselves and the worst way possible.
Baratunde Thurston 16:40
Wow. Wow. We'll be right back.
What does your Diné and Navajo identity mean to you beyond your DNA?
Krystal Tsosie 16:56
So, if I were to give my full introduction in Diné Bizaad, I would say *speaking in Diné Bizaad* So, what I have provided to you in the first two, three sentences is a description of my four clans, so everyone that my mother, my father and my grandparents are related to, then I introduce myself. So, I have given you my entire lineage through the time since Navajo people have existed, everyone that I'm related to, and by listening to my introduction, and introducing ourselves to each other, we get kinship ties, like, "oh, this person is my same clan, we are brothers and sisters; or they are a related clan, this person's my cousin, in a way." So, we don't have the same nuclear family structures as we do in dominant cultures, we have expanded kinship structures, and that's just beautiful because it means that our family is just more as an expanded unit.
Baratunde Thurston 18:21
It also strikes me that the way we introduce ourselves in dominant culture in the West is first-person singular and disconnected from others, like, "I'm Baratunde, whatever. Next." So, your introduction and self-definition was in relation to those who may not even still be here. I want to get a little more context on you. Tell me about your home. What was it like growing up, and where did you grow up?
Krystal Tsosie 18:52
Okay, these are great questions, and I first want to tackle the assumption that all indigenous peoples are based in their home-communities, because we are not. We have been forcibly-displaced economically and just geographically, and in this case, that is my family history. My mother comes from Shonto, Arizona, the northern region that's just pretty much closely the top border; then my father comes from the Loop area, which is in central Arizona, and he actually worked in the Phoenix Indian Medical Center, which is the largest Indian health service clinic in the entire U.S., but it's based in Phoenix, but he wasn't a doctor. Neither of my parents went to college, so I'm a first-generation student. Even though I was more economically well-situated than other members of my family, I lived in the ghetto of West Phoenix. Anyway, I was the only native kid and all my levels of school. It wasn't until I hit really high school and college that I started interacting with other Native American students, and the reception was cold. I was non-res.
Baratunde Thurston 20:08
Non-res: translate that for me.
Krystal Tsosie 20:10
Oh, I was not born and raised on a reservation. I didn't have the same lived experience. I was not as hardcore as they were. I was an apple: red on the outside, white on the inside.
Baratunde Thurston 20:23
Oh, you had apples! We had Oreos: black on the outside, white on the inside. Why is it always food?
Krystal Tsosie 20:32
I went to one of the top-ranked biomedical research universities in the world, and, God, it was blatantly obvious that, despite my accomplishments, that I was recruited because I was brown and, particularly, because I was Native American. They weren't interested in my training or interested in the fact that I wanted to contribute something to my own people. You've heard the term quarterlife crisis?
Baratunde Thurston 20:59
Krystal Tsosie 21:00
Okay, it was about that age, and I was questioning a lot about my identity as an indigenous person occupying a white-dominated space of academia and science; as a budding researcher, did I have the the wherewithal to make it as a scientist; and, also, just in terms of my own life plan, if I were to start again from scratch as a graduate student, would I be successful or am I just delaying some inevitable truth that maybe I wasn't good enough? That type of reckoning is hard to do when you're young and mid-20s, and that's something that I feel like scholars of color have at some point in their careers; but what spurred my change was the realization that, if I were to complete my Ph.D. in cancer biology, and if I were to invent something that fundamentally changed cancer therapies, and whatever I invented went through all of the phases of clinical trialing and made it to market, there was like a heart-wrenching feeling that it wouldn't benefit my own people. That it would benefit rich, affluent people first, long before it would benefit my own people. As a brown person in the sciences, I need to do better, and I actually ended up switching my field to bioethics and genetics, and definitely feel the direct impact of my research now. You so generously described me as a scientist and an activist in your introduction of me, and being called a scientist-activist is actually something that, depending on who you're talking to, can either be a compliment or an insult, because supposedly people feel like science should be objective, and that there is no room for conversations about racism and inequities in science. To state anything otherwise is apparently anti-science. I can't tell you how many times I've been called, as a scientist, anti-science by people who had no idea anything about science as a field.
Baratunde Thurston 23:36
Krystal Tsosie 23:38
We have to really question, when we over-dichotomize science versus anti-science, or even science as being acquainted with objectivity...
Baratunde Thurston 23:52
Krystal Tsosie 23:52
...because when we take it apart, when we're talking about humans, humans are messy. Science itself is messy. It is not objective. It is completely dependent on biases, decisions that are made at the federal level of what types of science are worthwhile for funding, or in terms of what types of research is deemed worthwhile, those are non-objective decisions.
Baratunde Thurston 24:25
Yeah, we all bring our perspective to that stuff. Yeah, the idea there's a neutral thing floating out in the demilitarized zones of all of our minds called "science" is a myth. So, thank you for breaking that down. A lot of folks who look at the tech world, they see algorithmic bias, they see hiring algorithms which don't have the right data leading to the exclusion of women, they see policing algorithms sending people back to prison, who really are ready to come back home. There's medical research value to having diversity of data, yet you've raised a lot of red flags around this call for data diversity. Why should we be concerned, and what's your experience as an indigenous person taught you?
Krystal Tsosie 25:11
So, diversity and inclusion is not the same as equity. We have to make sure that those terms are disentangled, and that we really pay close attention to what we mean by equity. Then, the question is, to what end?
Baratunde Thurston 25:27
Krystal Tsosie 25:28
Who actually benefits? In the scenarios that I described, 20+ years after data has been extracted from indigenous peoples, the people who have largely-benefited are not the community members that provided the blood, it's for-profit companies like Ancestry and 23andMe. Ancestry, since 2016 or 2017, they posted, every holiday quarter, profits over a billion dollars. So, this is reflective of people wanting to gift direct-to-consumer genetic ancestry tests as Christmas gifts, literally paying to give up your data to feed the algorithm that these companies are trying to develop. Then, recently, Ancestry was acquired by a venture capitalist firm for $6 billion. Now, 23andMe also has interest in collecting biomarkers from Native American peoples. These companies, and other genetic ancestry companies, have expressed interest in creating Native American-specific platforms, so that they can more accurately assess what percentage membership you are by blood. If we think about what we know about genetic variants contributing to disease, the lowest hanging fruit has already been picked. We already know the common variants contributing to things like gastric cancers and diabetes. The next sort of innovation is going to be in rare variants, or in variants that haven't been yet discovered in populations like our own, and that's also stayed attuned to the term discovery, right? Yeah. These terms are very intricately aligned with colonial language of discovery and of our peoples.
Baratunde Thurston 27:36
Hello, Columbus. Yeah.
Krystal Tsosie 27:38
Exactly. We have to really think about these direct parallels when we talk about the vanishing populations, when we talk about discovering variation. So, it's interesting, a lot of these drives for collecting data from diverse groups is tied with these long-term aims and goals that someday down the road precision and genomic medicine is going to improve health for all, but the pathway is not clear. I want to give a really old reference to a South Park episode. Can I do that?
Baratunde Thurston 28:15
Oh, yes. You just opened up my heart. I love South Park. Let's go.
Krystal Tsosie 28:21
Okay, so, keep in mind, I haven't watched South Park in years...
Baratunde Thurston 28:24
Krystal Tsosie 28:24
...but there's a classic episode with the underpants gnomes...
Archival (South Park) 28:27
Collecting underpants was just phase one.
So, what's phase two?
Hey, what's phase two?
Well, phase three is profit. Get it?
I don't get it. Do you guys get it?
Baratunde Thurston 28:38
Yes, I remember those guys.
Krystal Tsosie 28:39
Yeah, so phase one: collect underpants; phase two: *question mark*; phase three: profit.
Baratunde Thurston 28:47
Krystal Tsosie 28:48
Baratunde Thurston 28:48
Krystal Tsosie 28:48
Yeah, it's the same thing with precision and genomic medicine. It's step one: collect biomarkers from underrepresented people; step two: *question mark*; step three: there's supposed to be some benefit derived to the individuals with no clear pathway. In actuality, the real direct benefit is to drug companies, because they have a vested commercial interest in profiting from our genomes.
Baratunde Thurston 29:15
Wow, they're the underpants gnomes of genetics.
Krystal Tsosie 29:20
Oh my gosh.
Baratunde Thurston 29:22
You gotta keep using that, that's amazing. Krystal's got more thoughts on democracy and self-determination, that real citizen talk after the break.
A lot of the stuff you were saying about ownership of data and, you know, without it, you don't have accountability. For one, I'm like, "is she talking about indigenous genomic data or is she talked about my Facebook data?" Right? The parallels are really, really obvious, but we're not talking about Facebook, but we still are. In some ways, we're still talking about self-determination and power.
Krystal Tsosie 30:04
Exactly, but Facebook data usually has the risks centered on the individual. So, your search history usually uniquely identifies you, your own personal preferences. With genomic information, though, genomic data, that's biological information that links you and everyone you're related to. Let's think about third-party ancestry test sites. So, these are third-party databases in which people can take their results from 23andMe and Ancestry, then deposit it into a free database, and these databases are of interest for law enforcement agencies. In fact, law enforcement agencies, they used databases like this to identify the Golden State Killer.
Archival (Anne Marie Schubert, Sacramento County District Attorney) 30:53
The answer was, and always was going to be, in the DNA. We knew we could and should solve it using the most innovative DNA technology available at this time. We found the needle in the haystack, and it was right here in Sacramento.
Krystal Tsosie 31:13
Now, think about our communities, communities of color, like yours and mine, or indigenous communities in particular: we have larger family sizes, smaller generation gaps... One person's DNA--I have a hundred first cousins alone, I can't imagine how many third cousins I have--so I would be upset if some person I've never even met before decided to give up their information, my information, to a pharmaceutical company or another company.
Baratunde Thurston 31:47
Krystal Tsosie 31:48
I'd be further upset if that information was used by a federal agency to aid in racial genetic-profiling.
Baratunde Thurston 31:54
Yo, I'm right there with you, and I think the idea that my consent is not mine alone to give, because others are implicated in the consequences of that decision makes a ton of sense, and it's so intimate. If the first step was acknowledge the economic value of the data, then there's a presumed compensation due for use of this, and potentially even collective compensation because the connections are beyond the individual, in this case. What do you think about the implication that people should be paid because of the economic value of their data?
Krystal Tsosie 32:37
So, I know ethicists, in general, do not like these conversations of attaching commercial value to...
Baratunde Thurston 32:45
Oh, we're making ethicists mad. Okay.
Krystal Tsosie 32:47
...Yeah, but I want to add the flip side of this, because we know that commercial exploitation is tied with genomic data exploitation; therefore, if we are able to attach a commercial value to indigenous DNA, which is a scarce commodity that's incredibly important, then we should be able to create a dollar value on the exploitation of our people's DNA, and that is a call to justice. We really should be talking about benefit-sharing as a means of profit-sharing, and calling onto companies like drug companies that, if you want to collect our information and profit from it, that you need to be sure that the people contributing that information also benefits. If you can't give us a portion of that profit, then we need to call into question your practices.
Baratunde Thurston 33:42
Yo, can you tell me about where you're working now, and what's the Native BioData Consortium?
Krystal Tsosie 33:54
The Native BioData Consortium is an indigenous-led research nonprofit that started off as a biological and data repository.
Baratunde Thurston 34:05
Krystal Tsosie 34:05
What we wanted was to ensure that samples that were collected from any members actually benefited those committee members. We wanted to create a research institution in which the research questions were driven by community members' interests, and these hyper research questions probably more proximately relate to differences in disease and conditions in their communities than a research question that is driven by an outside researcher. So, they're the ones that understand that environmental changes have contributed to health.
Baratunde Thurston 34:48
Krystal Tsosie 34:49
They're the ones that understand that lifestyle and diet changes that have been imposed upon them are going to contribute to differences in health, that perhaps the Western starchy diets are different from the more agrarian lifestyles that they had for centuries beforehand. These are the factors that are often missing when we just look at precision medicine in a genomic-only framework; we're missing those cultural factors.
Baratunde Thurston 35:17
Yeah, if you're asking the wrong question, it doesn't matter how precise your answer is.
Krystal Tsosie 35:22
Baratunde Thurston 35:24
What else are you spearheading with the Consortium?
Krystal Tsosie 35:27
We are also spearheading a lot of education initiatives. We just finished a summer program called IndigiData.
Baratunde Thurston 35:37
IndigiData. I love that. Good job with the name.
Krystal Tsosie 35:42
Thank you. We were just so fortunate that we were able to secure funding to create this one-week workshop in which we were able to bring together undergraduate and graduate Indigenous students, and talk to them about data science and careers in data science, but then also data ethics and what it means to actually assert indigenous data sovereignties in their own communities. It was amazing. We had the first parts of the morning were devoted to guest lecturers who are all indigenous, who are all amazing scholars leading their own fields, using data science in their own particular unique ways; and then in the afternoon we talk coding, like, actually coded using environmental data that we collected and sequenced from tribal lands. It was just so cool to get the students to sort of get their hands dirty, in a sense, with the data. It really just opened their eyes to the larger questions that we discussed earlier, which is the fact that data is power. Data is power. Data is also linked to disempowerment, and if we want to change the narrative, then we need to change the next generation of data scientists that come from our communities.
Baratunde Thurston 37:14
What's the overall goal of educating indigenous data scientists?
Krystal Tsosie 37:18
Decolonization has to be done by historically-colonized people, no one else. So, it's really interesting when you have white academics who are looking to scholars of color, to figure out how to decolonize their syllabi. Oh, my gosh, I have a brief story. So, I did a Twitter conference called Decolonize DNA, and it was aligned with National DNA Day, and it was really to bring voices of disenfranchised communities, representative scholars to talk about how genomics could be reductionistic and, you know, reinforce these power dynamics that really need to be changed. After that, a lot of white people, and a lot of journalists who work for education journals, reached out to me and they asked me, "well, what can we learn from indigenous peoples?;" and "what recommendations would you give to white scholars for decolonizing their curricula?" I was like, "step down. Give your place up and allow a scholar of color, a colonized person, to take your place, because, ultimately, these narratives need to come from us, not you." Unsurprisingly, none of those interviews made it to press.
Baratunde Thurston 38:43
Yeah. What we're about, at large, in this season is thinking about how we use technology that serves people, not the other way around, and that serves collective power, not just selfish, individual power. When it comes to technology, there's so much good intention around sort of pro-civic, pro-democratic, small-D movements, like open source, and open data, and community sharing, and there's this lens that says, like, "democratizing access to technology makes it equal, makes that tool more available to all, which is good." What are your thoughts on that, in terms of the future of technology and how it affects, you know, our access to power?
Krystal Tsosie 39:35
Oh, my gosh, I rebel against the phrase democratizing data or democratizing science. What type of democracy are we talking about here? Are we talking about the American system of democracy, because the garbage fire that was the last election year should show that this is not a model by which we should follow any means of any path towards equality? To preference the American system of democracy over other forms of democracy is a form of white-colonial thinking. There are other forms of democracy that we need to consider, like indigenous systems of democracy that have long existed before the American system of democracy. We also have to think that any system that advocates for benefiting most is going to disenfranchise small underrepresented communities like our own, like indigenous peoples. It's going to continue to disenfranchise minority groups and substantiate those power imbalances. Democracy does not necessarily mean equality or equity, and these definitions of equity should be community-driven and they're culturally-specific, they should not be determined by the dominant cultures. Let's also think carefully about equality and equity. We have a lot of DEI efforts--diversity, inclusion and equity efforts across academia and across industries--and we get the diversity part and we get the inclusion part, sure. You want our people's data, that's nothing new. The equity portion, though, is key, and equity is not equality. A seat at the table isn't the same thing as voice at the table.
Baratunde Thurston 41:41
Yeah, you've done a lot, and I want to share that burden and that opportunity. We set up this show to encourage people to do things, and on the topic of balancing power and on the topic of data, more specifically, but lay out your thoughts on what we should be doing.
Krystal Tsosie 42:04
As kindly as I can state this, if you are a member that has been historically-empowered, at this point in time, especially when it comes to topics related to racism and inequality, and I say this as kindly as I can, "you need to sit down and shut up; and listen to the scholars, the people of color, the communities, and do what they recommend and follow their lead." Decision-making authorities need to shift to those that have been historically-disenfranchised. That's how we get change. If you want to advocate for change, you also need to provide room for dissenting voices, even if it's hard to hear.
Baratunde Thurston 42:59
Thank you, Krystal Tsosie, so much for your time, your teachings, your talent, and your portmanteaus. I really appreciate you.
Krystal Tsosie 43:12
Thank you. I love that word.
Baratunde Thurston 43:14
Me too. Krystal wants people to listen. It's not enough just to raise awareness, though. When we think back to the citizening principles, Krystal wants people to show up, but also to make space for those who haven't been able to show up, who haven't been able to citizen due to historical and systemic oppression. Now, as we're building out these new systems built on data and new technologies, we have to make sure we aren't repeating the old methods of extraction, and exploitation, and disenfranchisement. Neither a majority-white government nor a majority-white business should be determining the tribal membership status of an indigenous person. That doesn't make any damn sense. We have this opportunity to close gaps and undo harms caused by just this sort of thinking, and start taking justice into account when we use data. Now, after reflecting on both of these conversations with Krystal and with Kasia, I think the answer to data justice actually goes both ways. Yeah, we need more diverse datasets, just like we need more diverse corporate boards, but not just that. We also need to change the way corporations wield power, and we need a data ecosystem where people have agency over their data, specifically those people who've been cut out of or abused by our current system. One of our pillars of How to Citizen is Restoring Power to the People, and one of the biggest gaps of tech is that it's used to disempower folks from literally showing up for themselves and for others, because of how we get misrepresented in data and the effects that that can have on our choices. Both Kasia and Krystal show us examples of people taking that power back. When thinking about this show, How to Citizen, I think we need to keep breathing new life into this citizen verb and apply the lessons of our guests and evolve, as well. So, citizen, what does that mean? I think it should also mean that we explicitly seek to distribute power and resources to those long-excluded from systems of citizening. Next week, we dive into the mystic, and I learned about the link between chicken farms, Blockchain, Logic, and Tarot. I know that sounds like a word salad, but trust me, it's a dope conversation.
Xiaowei Wang 45:57
...Picture of the chicken, how many steps it took--there's like a pedometer...
Baratunde Thurston 46:02
You're, like, "oh, the chicken got it's 10,000 steps in. Let's eat." Chickens and Blockchain, come on, now. Now, it's that time in the episode where we share some actions that you can take. First up, a thinking exercise. Ask yourself: how much is my data privacy worth to me, and how do I feel about non-consensual surveillance based on my data? Now, add an element of genetic information. How would you feel if any of your biological relatives donated genetic info tied to you that could be bought and sold? Next, I want you to get informed about exploitative data collection historically and right now. We've linked to three articles in the show notes and on our site. Then, finally, here are some ways to publicly participate. You can help empower indigenous scientists working with tribal communities to ensure that the benefits of biomedicine and public health go to indigenous peoples by making a donation to the Native BioData Consortium. Check them out online, and help protect yourself and slow the market for selling all of our data by installing the Global Privacy Control. This is a feature of certain web browsers that lets you signal to a site, "yo, don't be trading all my information," and it's backed by law. We've got links to all this in the show notes and on our website at howtocitizen.com. Follow us on Instagram @howtocitizen, and tag us in your posts about data or exploitation, or anything--well, not anything, I don't want posts about you trying to do a Tik Tok dance or something... or one or two of those might be fun. Make my life more interesting. Thanks for listening and keep citizening. How to Citizen with Baratunde is a production of iHeartRadio Podcasts and Dustlight Productions. Our executive producers are me, Baratunde Thurston, Elizabeth Stewart and Misha Euceph. Our senior producer is Tamika Adams, our producer is Alie Kilts, and our assistant producer is Sam Paulson. Stephanie Cohn is our editor, Valentino Rivera is our senior engineer, and Matthew Lai is our apprentice. Original music by Andrew Eapen, with additional original music for season 3 from Andrew Clausen. Additional production help from Arwen Nicks. This episode was produced and sound designed by Tamika Adams Special thanks to Joelle Smith from iHeartRadio and Rachael Garcia at Dustlight Productions.
Transcribed by https://otter.ai
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