Speaker 1: Yeah. Welcome to How to Citizen with Baritune Day, a
Speaker 1: podcast that reimagine citizen as a verb, not a legal status.
Speaker 1: This season is all about tech and how it can
Speaker 1: bring us together instead of tearing us apart. We're bringing
Speaker 1: you the people using technology for so much more than
Speaker 1: revenue and user growth. They're using it to help us citizen. Today,
Speaker 1: we're continuing our conversation about data. Last time with Kasha,
Speaker 1: we looked at the way data scientists categorize and use
Speaker 1: data to make algorithms and other technologies. The hope is
Speaker 1: if the data set used is properly labeled and vetted,
Speaker 1: the better the tech eventually becomes, and we can make
Speaker 1: tools that are smarter and more importantly, more equitable. And
Speaker 1: the algorithm comes out the end, and there's a decision
Speaker 1: that's made you get the loan. You didn't get the loan.
Speaker 1: The algorithm recognizes your speech, doesn't recognize your speech, sees you,
Speaker 1: doesn't see you. People think, oh, just change the algorithm.
Speaker 1: Oh no, you have to go all the way back
Speaker 1: to the beginning. Cash is right. We can't just change
Speaker 1: the algorithm. We have to go further back and examine
Speaker 1: how data is collected in the first place. So consider
Speaker 1: this episode Data Justice Part two. Right now, it's possible
Speaker 1: that data is the most valuable resource on the planet.
Speaker 1: We use it to drive advertising, medical research, product development.
Speaker 1: Its applications are endless, and I'm not being hyperbolic. In
Speaker 1: terms of financial value, data currently beats out coal oil.
Speaker 1: It's a commodity. That race to collect and monetize data
Speaker 1: has transformed into a veritable gold rush, or I guess
Speaker 1: I should say data rush. Now. In its most basic form,
Speaker 1: data is information, but beyond that, it also helps define
Speaker 1: parts of who we are and the smallest part of us.
Speaker 1: There's a market for that too. Those tiny nuggets of
Speaker 1: data are precious and extremely personal. They live inside of us.
Speaker 1: I'm talking about genetic data. Are geno that O G code.
Speaker 1: The business around genetic data is huge, and I don't
Speaker 1: mean just the twenty three and me tests you gave
Speaker 1: your family member last holiday season. I'm talking about a
Speaker 1: global industry worth billions of dollars. Bio data companies initially
Speaker 1: set out to make genetic testing approachable and affordable for
Speaker 1: the general public, and at first, these little tubes they
Speaker 1: were intended to assess our risk for genetic diseases. But
Speaker 1: since then they've really grown in popularity by offering us
Speaker 1: a window into our past, our geographical ancestry. And when
Speaker 1: we spit in the tube and contribute to these data sets, Yo,
Speaker 1: it feels revelatory and super scientific. Like I found out
Speaker 1: I was exactly twenty five point three percent Nigerian WHOA.
Speaker 1: I even hosted a podcast partnered with twenty three in
Speaker 1: Me called spit you might have heard it, and I
Speaker 1: got to talk to all kinds of people about how
Speaker 1: DNA can give us a new perspective on our relationships
Speaker 1: with each other and with our health. At the time,
Speaker 1: I was thrilled to share these new ideas about an
Speaker 1: emerging science. It was a shiny and new way of
Speaker 1: looking at ourselves and our ancestors. But my guest today
Speaker 1: made me rethink everything. Who does data ultimately benefit? If
Speaker 1: the data is not benefiting the people, the individuals, the
Speaker 1: communities that provided that data, then who are we using
Speaker 1: it for? Who are we protecting and who are we
Speaker 1: uplifting at the cost of others? Justice. Crystal Socie is
Speaker 1: an Indigenous meticists and bioethicist at the Native Biodata Consortium.
Speaker 1: She used to work in precision medicine, developing targeted therapies
Speaker 1: and treatments focused on cancer. But that experience led her
Speaker 1: to co found the nonprofit Consortium with other Indigenous scientists,
Speaker 1: and they built a network for Native researchers to collaborate
Speaker 1: and protect their data heritage to already underserved and underrepresented
Speaker 1: people's data could be part of what gives these communities
Speaker 1: determination and agency over their own personhood and knowledge. Hello, Hello,
Speaker 1: welcome to how does Citizen. Thank you so much for
Speaker 1: the kind invite. You are so welcome. We're very excited
Speaker 1: to have you as a part of Crystal joined me
Speaker 1: from Phoenix, Arizona, which is the ancestral homeland of the
Speaker 1: authom Pepash and Hagm people's. I joined her from northeast
Speaker 1: Los Angeles, the homeland of the Tongua people's who are
Speaker 1: also known as the Keeach. I want to start with
Speaker 1: your ted talk called d n A is not our identity.
Speaker 1: I in here to Vanderbilt to pursue a PhD in genetics,
Speaker 1: and because of that, many people come up to me
Speaker 1: with this question in mind, who am I? Really? What
Speaker 1: they're asking is who am I? In context? It is
Speaker 1: direct to consumer genetic test kit. Now you probably have
Speaker 1: been made the concept. You spend a hundred to two
Speaker 1: hundred dollars, You spent a whole lot of saliva, more
Speaker 1: than you ever thought you can ever produce in your
Speaker 1: entire life, and you mail it out thirty days later
Speaker 1: you get a result, and that result is a percent
Speaker 1: estimation of ancestral background. First of all, nice work. And
Speaker 1: that question of who am I is actually mired in
Speaker 1: something else because according to ancestry d m A, the
Speaker 1: number one question is why isn't my Native American ancestry
Speaker 1: not showing up? Oh? Okay, I only have ten minutes,
Speaker 1: not ten years, to unpack the assertedness of that claim,
Speaker 1: or to tell you how dangerous it is to equate
Speaker 1: indigenousity in a false way. And I think a lot
Speaker 1: of us get the opposite message. You know, there's a
Speaker 1: lot of DNA testing. It's become like a party favor
Speaker 1: in some ways to define yourself by the data in
Speaker 1: your genetics and run these tests, so people think the opposite. Actually,
Speaker 1: my DNA is my identity. That's what all the messaging says.
Speaker 1: So tell me why you say our DNA is not
Speaker 1: that our genetics are only half of the story. And
Speaker 1: in fact, when we talk about health inequities and communities
Speaker 1: of color, we really have to talk about the other
Speaker 1: structural barriers that relate to health and disease. So, for instance,
Speaker 1: with the COVID pandemic, there was a lot of press
Speaker 1: about how these are rates for initially so much higher
Speaker 1: and tribal communities such as my own, but those are
Speaker 1: not due to biological differences. They were due to things
Speaker 1: like our water rights being usurped from us, that we
Speaker 1: didn't have water to wash our hands, which is a
Speaker 1: key preventative measure for curbing viral transmission. Also, the fact
Speaker 1: that we have to drive ours one way just to
Speaker 1: get to a preventative health clinic. Technology is limiting our
Speaker 1: ability to detect these genetic differences across the genome. We
Speaker 1: don't have that much information yet, and to reduce all
Speaker 1: of these differences to just biology is just ignoring the
Speaker 1: beautiful diversity that's within all of our cultures worldwide. And
Speaker 1: that's just talking about the health component. I haven't even
Speaker 1: gotten into the genetic ancestral components. We'll get into that.
Speaker 1: Because this idea that genetics that we interpret them in
Speaker 1: a reductive and deterministic way, i e. The genome tells
Speaker 1: us everything, that data set is us. You're rejecting that,
Speaker 1: and you're reject it in the health conversation. But you know,
Speaker 1: as a Native American in particular, why are you rejecting
Speaker 1: this idea of genetic determinism for ancestry. Well, let's think
Speaker 1: back just a few years ago. This is Elizabeth Warren.
Speaker 1: What are the facts you can absolutely have a Native
Speaker 1: American ancestry in your pedigree. Oh my gosh, it feels
Speaker 1: like actually forever ago. But a few years ago when
Speaker 1: Elizabeth Warren announced that she had a DNA test that
Speaker 1: showed her supposed Native American ancestry. And Okay, let's unpack
Speaker 1: this a little bit further. Okay, let's go there, let's
Speaker 1: get it. Let's go yes right now. Due to historical
Speaker 1: distrust and I'm not talking about centuries ago or decades ago,
Speaker 1: I'm talking about just in the past few years, Native
Speaker 1: Americans in the US have largely not contributed their genetic
Speaker 1: information to research or willingly to genetic ancestry tests. So
Speaker 1: because of that, there's not that much information that links
Speaker 1: specific genetic factors to a particularly US tribal nation. So
Speaker 1: where do they get that information from. They get it
Speaker 1: from openly available bio markers from large scale diversity projects
Speaker 1: about twenty years ago. We're here to celebrate the completion
Speaker 1: of the first survey of the entire human genome. Without
Speaker 1: a doubt, this is the most important, most wondrous map
Speaker 1: ever produced by humankind. Today's announcement represents more than particularly
Speaker 1: the Human Genome Diversity Project and also National Geographic Magazine
Speaker 1: did the Genographic Project. And these were two projects that
Speaker 1: were meant to sample worldwide populations, particularly indigenous peoples before
Speaker 1: we disappeared. And I'm doing the air quotes, so there's
Speaker 1: this huge rush to sort of sample as many indigenous
Speaker 1: peoples before we were wiped off the base of the
Speaker 1: planet due to colonial factors, no, not caring the fact
Speaker 1: that our ways of life were disappearing. Now, we wanted
Speaker 1: their genomes before we were dead and gone. And this
Speaker 1: is like the same rhetoric that colonists have been trying
Speaker 1: to cause our extinction for centuries, and this is just
Speaker 1: like the genetic version of that. So what ended up
Speaker 1: happening is researchers went into remote communities in central Amazon
Speaker 1: area in Mexico in Central America, and they collected bio
Speaker 1: markers from indigenous peoples, and they promised that they were
Speaker 1: going to bring them medicines and deliver cures for conditions
Speaker 1: that besieged them. They took their blood, and did they
Speaker 1: uphold their promises. No. So when you think about tests
Speaker 1: like twenty three and ancestry, they're using these openly sourced
Speaker 1: bio markers from disinphra chries, disempowered, exploited indigenous groups that
Speaker 1: are south of the US border, and they're using these
Speaker 1: markers and also Asian biomarkers, which is a totally different
Speaker 1: part of the world to infer statistically statements about US ancestry,
Speaker 1: forgetting the fact that every single indigenous group has their
Speaker 1: own distinct cultural and genetic histories. And those bio markers
Speaker 1: that supposedly realified a story by Lizeth Warren, those biomarkers
Speaker 1: don't really show anything except for the fact that she
Speaker 1: perhaps had a statistical relationship with one of maybe fifty
Speaker 1: people in the Mexico region of the globe. Has nothing
Speaker 1: to do with the answert she is trying to claim.
Speaker 1: And it's also horrible because Native American rights are tied
Speaker 1: to blood quantum rules and blood quantum rules are usually
Speaker 1: derived by a person's lineage, like can they prove that
Speaker 1: they have a direct grandmother or a parent or more
Speaker 1: even distant ancestor who was a member of that community.
Speaker 1: But these are kinship structures derived from genealogy, not by blood.
Speaker 1: It's just a misno more that they're called blood quantum rules.
Speaker 1: But let's remember the reason why blood quantum rules started.
Speaker 1: It was a means for deluding our rights and our
Speaker 1: claims to sovereign resources that are actually supposed to be
Speaker 1: given to us by treaty in exchange for our lands.
Speaker 1: And by using these unequated rules, were deluding our rights
Speaker 1: to those claims and then to reify it by these
Speaker 1: genetic ancestry tests. It's just horrible. So I want to
Speaker 1: pause and rewind for a few thoughts. The theft of
Speaker 1: blood is literally vampiric, right, and the idea of continuing
Speaker 1: to extract and exploit, which are fancy words for steel,
Speaker 1: is a continuation of colonial behavior. So it sounds to
Speaker 1: me like what you're describing as a as a vampiric
Speaker 1: genetic colonialism. It's interesting that you use that term vampiric
Speaker 1: because when these large scale diversity projects were announced, global
Speaker 1: Indigenous populations at least six hundred of them actually went
Speaker 1: to the United Nations and actually asked for the cessation
Speaker 1: of these studies, and particularly called the genographic project a
Speaker 1: vampire project because it was akin to vampire bats coming
Speaker 1: in the middle of the night, stealing their blood and
Speaker 1: then leaving when the morning came. And that's what felt like,
Speaker 1: what do Indigenous people lose out on if they don't
Speaker 1: have their data in their own hands, if they don't
Speaker 1: have that data sovereignty. Well, first of all, if they
Speaker 1: are not in charge of their data and they don't
Speaker 1: have the same saying data decisions, then how are they
Speaker 1: going to call for accountability to ensure that they're able
Speaker 1: to benefit from the collection of their information. But then
Speaker 1: also we have to worry about whether or not d
Speaker 1: NA claims to indigenousity will be undermined. So, for instance,
Speaker 1: there's a number of scholars that are tracking descendants of
Speaker 1: Mate populations and First Nations Canada people that claim to
Speaker 1: be members of tribal communities but really have no evidence,
Speaker 1: but are able to claim rights that should be only
Speaker 1: to Indigenous people's. And what that effectively does is that
Speaker 1: undermines the strength of communities because it's not like these
Speaker 1: rights to resources are unlimited. It's very finite. There's like
Speaker 1: a flip side version of this with the one drop
Speaker 1: rule in US history about who's black, and that was
Speaker 1: used as a weapon to kind of exclude people from
Speaker 1: the resource of the majority population. Well, you're not white,
Speaker 1: therefore you go to the back of everything, every list.
Speaker 1: And there's an irony in the modern times when we
Speaker 1: have so much language about inclusivity and equity and diversity,
Speaker 1: like the whole trifecta, that the resources of a colonial
Speaker 1: government will be used to determine membership in an indigenous community,
Speaker 1: and that at the very heart of sovereignty, probably more
Speaker 1: than water or land, is self definition, right, self determination.
Speaker 1: And so if this outside authority, which you've got mad
Speaker 1: reason not to trust sto already now usurps your own
Speaker 1: membership rules based on questionable and certainly in complete science,
Speaker 1: that's real, messed up. That's that's where I landed. That's
Speaker 1: all that built up to. That's just real. Know that
Speaker 1: the cruelest joke is that US indigenous groups have taken
Speaker 1: this system that was meant to delude us from our
Speaker 1: rights to resources, and now we have used that same
Speaker 1: system to define ourselves and even exclude others that should
Speaker 1: be a part of our community. That is just intrinsic
Speaker 1: colonialism reflected upon ourselves and the worst way possible. Wow Wow,
Speaker 1: We'll be right back. What does your denay and Navajo
Speaker 1: identity mean to you beyond your DNA? So if I
Speaker 1: were to give my full introduction, Dini bazade I would
Speaker 1: say can the Cheney, initially the Nain and then Crystal
Speaker 1: Sissy Hitia. So what I have provided to you in
Speaker 1: the first two three sentences as a description of my
Speaker 1: four clans, so everyone that my mother, my father, and
Speaker 1: my grandparents are related to. And then I introduced myself.
Speaker 1: So I have given you my entire lineage through the
Speaker 1: time since Navajo people have existed, everyone that I'm related to,
Speaker 1: And by listening to my introduction and introducing ourselves to
Speaker 1: each other, we get kinship ties like oh, this person
Speaker 1: is my same clan, we are brothers and sisters, or
Speaker 1: they are a related clan, this person is my cousin
Speaker 1: in a way, and so we don't have like the
Speaker 1: same nuclear family structures as we do in dominant cultures.
Speaker 1: We have expanded kinship structures, and that's just beautiful because
Speaker 1: it means that our family is just more as an
Speaker 1: expanded unit. It also strikes me that the way we
Speaker 1: introduce ourselves in dominant culture in the West is first person,
Speaker 1: singular and disconnected from others. It's like, I'm very Toonday,
Speaker 1: whatever next. And so your introduction and self definition was
Speaker 1: in relation to those who may not even still be here.
Speaker 1: I want to I want to get a little more
Speaker 1: context on you. Tell me about your home. What was
Speaker 1: it like growing up and where did you grow up? Okay,
Speaker 1: these are great questions, and I first want to tackle
Speaker 1: the assumption that all Indigenous peoples are based in their
Speaker 1: home communities, because we are not. We have been forcibly
Speaker 1: displaced economically and just geographically. And in this case, that
Speaker 1: is my family history. My mother comes from Chanta, Arizona,
Speaker 1: the northern region that's just pretty much closely Utah border.
Speaker 1: And then my father comes from the Loop area, which
Speaker 1: is in central Arizona. And he actually worked in the
Speaker 1: Phoenix Indian Medical Center, which is the largest Indian health
Speaker 1: service clinic in the entire US, but it's based in Phoenix.
Speaker 1: But he wasn't a doctor. Neither of my parents went
Speaker 1: to college, so I'm a first generation student. Even though
Speaker 1: I was more economically well situated than other members of
Speaker 1: my family. I lived in the ghetto of West Phoenix,
Speaker 1: and anyway, I was like the only Native kid in
Speaker 1: all my levels of school. It wasn't until I hit
Speaker 1: really high school and college that I started interacting with
Speaker 1: other Native American students, and the reception was cold. Like
Speaker 1: I was non rez I was non res Translate that
Speaker 1: for me, Oh, I was not born and raped. I
Speaker 1: was on a reservation. I didn't have to say little experience.
Speaker 1: I was not as hardcore as they were. I was
Speaker 1: an apple right on the outside, white on the inside.
Speaker 1: Oh you had apples, we had oreos. Black on the outside,
Speaker 1: white on the inside. It's why is it always food?
Speaker 1: I went to one of the top ranked biomedical research
Speaker 1: universities in the world, and God, it was blatantly obvious that,
Speaker 1: despite my accomplishments, that I was recruited because I was brown,
Speaker 1: and particularly because I was Native American. They weren't interested
Speaker 1: in my training or interested in the fact that I
Speaker 1: wanted to contribute something to my own people. You've heard
Speaker 1: the term quarter like crisis. Okay, it was about that age,
Speaker 1: and I was questioning a lot about my identity as
Speaker 1: an Indigenous person occupying a white dominated space of academia
Speaker 1: and science as a budding researcher, did I have the
Speaker 1: wherewithal to make it as a scientist. And then also
Speaker 1: just in terms of my own life land, if I
Speaker 1: were to start again from scratch as a graduate student,
Speaker 1: would I be successful or am I just delaying some
Speaker 1: inevitable truth that maybe I wasn't good enough. That type
Speaker 1: of reckoning is hard to do when in you're young
Speaker 1: and mid twenties, and that's something that I feel like
Speaker 1: scholars of color have at some point in their careers.
Speaker 1: But what spurred my change was the realization that if
Speaker 1: I were to complete my PhD in cancer by ology,
Speaker 1: and if I were to invent something that fundamentally changed
Speaker 1: cancer therapies, and whatever I invented went through all of
Speaker 1: the phases of clinical trialing and made it to market,
Speaker 1: there was like a heart wrenching feeling that it wouldn't
Speaker 1: benefit my own people, That it would benefit rich, effluent
Speaker 1: people first, long before it would benefit my own people.
Speaker 1: As a brown person, and the sciences like I need
Speaker 1: to do better, and I actually ended up switching my
Speaker 1: field to bioethics and genetics and definitely feel the direct
Speaker 1: impact of my research. Now, you so generously described me
Speaker 1: as a scientist and an activist in your introduction of me,
Speaker 1: and being called a scientists activists is actually some thing that,
Speaker 1: depending on who you're talking to, can either be a
Speaker 1: compliment or an insult, because supposedly people feel like science
Speaker 1: should be objective and that there is no room for
Speaker 1: conversations about racism and inequities in science, and to state
Speaker 1: anything otherwise is apparently anti science. I can't tell you
Speaker 1: how many times I've been called as a scientist anti
Speaker 1: science by people who had no idea anything about science
Speaker 1: as a field. We have to really question when we
Speaker 1: over it economize science versus anti science, or even science
Speaker 1: as being equated with objectivity, because when we take it apart,
Speaker 1: when we're talking about humans, humans are messy. Science itself
Speaker 1: is messy. It is not objective. It is completely dependent
Speaker 1: on biases. Decisions that are made at the federal level
Speaker 1: of what types of science are worthwhile for funding or
Speaker 1: in terms of what types of research is deemed worthwhile
Speaker 1: those are non objective decisions. Yeah, we all bring our
Speaker 1: perspective to that stuff and have the idea there's a
Speaker 1: neutral thing floating out in the demilitarized zones of all
Speaker 1: of our minds called science is a myth. So thank
Speaker 1: you for breaking that down. A lot of folks who
Speaker 1: look at the tech world they see algorithmic bias. They
Speaker 1: see hiring algorithms which don't have the right data leading
Speaker 1: to the exclusion of women. They see policing algorithms sending
Speaker 1: people back to prison who really are ready to come
Speaker 1: back home. There's medical research value to having diversity of data.
Speaker 1: Yet you've raised a lot of red flags around this
Speaker 1: call for data diversity. Why should we be concerned and
Speaker 1: what's your experience as an indigenous person taught you? So?
Speaker 1: Diversity and inclusion is not the same as equity. We
Speaker 1: have to make sure that those terms are disentangled and
Speaker 1: that we really pay close attention to what we mean
Speaker 1: by equity. But then the question is to what end
Speaker 1: and who actually benefits? And in the scenarios that I described,
Speaker 1: twenty plus years after data has been extracted from Indigenous peoples,
Speaker 1: the people who have largely benefited are not the community
Speaker 1: members that provided the blood. It's for profit companies like
Speaker 1: ancestry and three and me. Ancestry since seventeen they posted
Speaker 1: every holiday quarter profits over a billion dollars, So this
Speaker 1: is reflected of people wanting to gift direct to consumer
Speaker 1: genetic ancestry tests as Christmas gifts, literally paying to give
Speaker 1: up your data to feed the algorithms that these companies
Speaker 1: are trying to develop. And then recently Ancestry was acquired
Speaker 1: by a venture capitalist firm for six billion dollars. Now
Speaker 1: twenty and three and Me also has interest in collecting
Speaker 1: Bible markers for Native American people's. These companies and other
Speaker 1: genetic ancestry companies have expressed interest in creating Native American
Speaker 1: specific platforms so that they can more accurately assess what
Speaker 1: percentage membership you are by blood. If we think about
Speaker 1: what we know about genetic variants contribute to disease, the
Speaker 1: lois hanging fruit has already been picked. We already know
Speaker 1: the common variants contributing to things like gastric cancers and diabetes.
Speaker 1: The next sort of innovation is going to be in
Speaker 1: rare variants or in variants that haven't been yet discovered
Speaker 1: in populations like our own and that's also like stay
Speaker 1: tuned to the term like discovery, right, because these terms
Speaker 1: are very intricately aligned with colonial language of discovery and
Speaker 1: of our people's Hello Columbus. Yeah, exactly. We have to
Speaker 1: really think about these direct parallels when we talk about
Speaker 1: vanishing populations and we talk about discovering variation. So it's
Speaker 1: interesting a lot of these drives for collecting data from
Speaker 1: diverse groups is tied with these long term aims and
Speaker 1: some today down the road, precision and genomic medicine is
Speaker 1: going to improve health for all, but it's the pathway
Speaker 1: is not clear. I want to give a really old
Speaker 1: reference to a South Park episode? Can I do that? Yes?
Speaker 1: You just you opened up my heart? I love South Park.
Speaker 1: Let's go okay, So keep in mind I haven't watched
Speaker 1: the South Park in years, but there's a classic episode
Speaker 1: with the underpants gnomes co lactant kind of pants. Just phose? When?
Speaker 1: So what's phase two? H what's phase two? Well? The
Speaker 1: thrill of profit? I don't get it. Yes, yes, phase
Speaker 1: one collect underpants, phase two question mark phase three profits. Yes, yeah,
Speaker 1: it's the same thing with precision genomics. It's like step
Speaker 1: one collect bio markers. From underrepresented people Step two question
Speaker 1: marks Scept three. They're supposed to be some benefits to
Speaker 1: prove to the individuals both no clear pathway and in actuality,
Speaker 1: the real direct benefit is to drug companies because they
Speaker 1: have a vested commercial interest in profiting from They're the
Speaker 1: underpants gnomes of genetics. Oh my gosh, you gotta keep
Speaker 1: using that. That's amazing. Crystal's got more thoughts on democracy
Speaker 1: and self determination that real citizen talk after the break.
Speaker 1: A lot of this stuff you were saying about ownership
Speaker 1: of data, and you know, without it you don't have accountability.
Speaker 1: For one, I'm like, is she talking about indigenous genomic data?
Speaker 1: Is she talking about my Facebook data? Right? The parallels
Speaker 1: are really really obvious. But we're not talking about Facebook,
Speaker 1: but we we still are in some ways that we're
Speaker 1: still talking about self determination and power exactly. But Facebook
Speaker 1: data usually has the risks centered on the individual. So
Speaker 1: your search history usually uniquely identifies you your own personal
Speaker 1: preferences with genomic information. Though genomic data, that's biological information
Speaker 1: that links you and everyone you're related to. Let's think
Speaker 1: about third party ancestry test sites. So these are a
Speaker 1: third party databases in which people can take their results
Speaker 1: from twenty three and ancestry and then deposited into a
Speaker 1: free database. And these databases are of interest for law
Speaker 1: enforcement agencies, and in fact, law enforcement agencies they used
Speaker 1: databases like this to identify the Golden State killer. The
Speaker 1: answer was and always was going to be in the
Speaker 1: d N A we knew we could and should solve
Speaker 1: it using the most innovative DNA technology available at this time.
Speaker 1: We found the needle in the haystack, and it was
Speaker 1: right here in Sacramento. Now, think about our communities, communities
Speaker 1: a color like yours and mine, or like indigenous communities
Speaker 1: in particular. We have larger family sizes, smaller generation gaps
Speaker 1: one person's DNA. I have a hundred first cousins alone.
Speaker 1: I can't imagine how many third cousins I have. So
Speaker 1: I would be upset if you know some person I've
Speaker 1: never been met before decided to give up their information,
Speaker 1: my information to a pharmaceutical company or another company. And
Speaker 1: I'd be further upset if that information was used by
Speaker 1: a federal agency to aid in racial genetic profiling. YO,
Speaker 1: I'm right there with you, and I think the idea
Speaker 1: that my scent is not mine alone to give because
Speaker 1: others are implicated in the consequences of that decision. Makes
Speaker 1: a ton of sense, and it's so intimate. If the
Speaker 1: first step was acknowledge the economic value of the data,
Speaker 1: then there's presumed compensation do for use of this, and
Speaker 1: potentially even collective compensation because the connections are beyond the
Speaker 1: individual in this case, What do you think about the
Speaker 1: implication that people should be paid because of the economic
Speaker 1: value of their data. So, I know ephesis in general
Speaker 1: do not like these conversations of attaching commercial value to
Speaker 1: We're making ethicis mad? Okay? Yeah, But I I want
Speaker 1: to add the flip side of this, because we know
Speaker 1: that commercial exploitation is tied with genomic data exploitation. Therefore,
Speaker 1: if we are able to attach a commercial value to
Speaker 1: indigenous DNA, which is a scarce commodity that's incredibly important,
Speaker 1: then we should be able to create a dollar value
Speaker 1: on the exploitation of our people's DNA. And that is
Speaker 1: a call to justice. And we really should be talking
Speaker 1: about benefit sharing as a means of profit sharing and
Speaker 1: calling onto companies like drug companies that if you want
Speaker 1: to collect our information and profit from it, then you
Speaker 1: need to be sure that the people contributing that information
Speaker 1: also benefit and if you can't give us a portion
Speaker 1: of that profit, then we need to call into question
Speaker 1: your practices. Yo, can you tell me about where you're
Speaker 1: working now and what's the Native Bio Data Consortium. The
Speaker 1: Native Bio Data Consertion is an Indigenous led research nonprofit
Speaker 1: that started off as a biological and data repository. What
Speaker 1: we wanted was to ensure that samples that were collected
Speaker 1: from mimmunity members actually benefited those community members. And we
Speaker 1: wanted to create a research institution in which the research
Speaker 1: questions were driven by community members interests. And these type
Speaker 1: of research questions probably more proximately relate to differences in
Speaker 1: disease and conditions in their communities than a research question
Speaker 1: that is driven by an outside researcher. So they're the
Speaker 1: ones that understand that environmental changes have contributed to health.
Speaker 1: They're the ones that understand that lifestyle and diet changes
Speaker 1: that have been imposed upon them are going to contribute
Speaker 1: to differences in health that perhaps the West turned starchy
Speaker 1: diets are different from the more agrarian lifestyles that they
Speaker 1: had for centuries beforehand. These are factors that are often
Speaker 1: missing when we just look at precision medicine in a
Speaker 1: genemic only framework, we're missing those cultural factors. If you're
Speaker 1: asking the wrong question, it doesn't matter how precise your
Speaker 1: answer is. Yes. What else are you spearheading? With the consortium?
Speaker 1: We are also spearheading a lot of education initiatives. We
Speaker 1: just finished a summer program called Indigit Data. Indigit Data,
Speaker 1: I love that good job with the name, Thank you.
Speaker 1: We were just so fortunate that we were able to
Speaker 1: secure funding to create this one week workshop in which
Speaker 1: we were able to bring together undergraduate and graduate Indigenous
Speaker 1: students and talk to them about data science and careers
Speaker 1: and data science, but then also data ethics and what
Speaker 1: it means to actually assert indigenous data sovereignties in their
Speaker 1: own communities. And it was amazing. We had, like the
Speaker 1: first parts of the morning were devoted to guest lectures
Speaker 1: who are all Indigenous, who are all amazing scholars leading
Speaker 1: their own fields using data science and their own particularly
Speaker 1: unique ways. And then in the afternoon we talked coding,
Speaker 1: like actually coded using environmental data that we collected and
Speaker 1: sequenced from tribal lands, and it was just so cool
Speaker 1: to get the students to sort of get their hands
Speaker 1: dirty in a sense with the data, and it really
Speaker 1: just opened their eyes to the larger questions that we
Speaker 1: discussed earlier, which is the fact that data is power.
Speaker 1: Data is power. Data is also linked to disempower mournment.
Speaker 1: And if we want to change the narrative, then we
Speaker 1: need to change the next generation of data scientists that
Speaker 1: come from our communities. What's the overall goal of educating
Speaker 1: indigenous data scientists. De Colonization has to be done by
Speaker 1: historically colonized people, no one else. So it's really interesting
Speaker 1: when you have white academics who are looking to scholars
Speaker 1: of color to figure out how to de colonize their
Speaker 1: syllabi and oh my gosh, I have a brief story.
Speaker 1: So I did a Twitter conference called de Colonized DNA
Speaker 1: and it was in lined with National DNA DA and
Speaker 1: it was really to bring voices of disenfranchised communities and
Speaker 1: representative scholars to talk about how janet mix could be
Speaker 1: reductionistic and you know, reinforce these power dynamics that really
Speaker 1: need to be changed. And after that, a lot of
Speaker 1: white people and a lot of journalists who work for
Speaker 1: education journals reached out to me and they asked me, well,
Speaker 1: what can we learn from indigenous peoples and what recommendations
Speaker 1: would you give to white scholars for decolonizing their curricula.
Speaker 1: And I'm like, step down, give your place up, and
Speaker 1: allow a scholar of color, a colonized person, to take
Speaker 1: your place, because ultimately these narratives need to come from us,
Speaker 1: not you. Unsurprisingly, none of those interviews made it depress.
Speaker 1: What we're about at large in this season is thinking
Speaker 1: about how we use technology that serves people, not the
Speaker 1: other way around, and that serves collective power, not just
Speaker 1: selfish and of visual power. And when it comes to technology,
Speaker 1: there's so much good intention around sort of pro civic,
Speaker 1: pro democratic, small D movements like open source and open
Speaker 1: data and community sharing. And there's this lens that says like,
Speaker 1: democratizing access to technology makes it equal, makes that tool
Speaker 1: more available to all, which is good. What are your
Speaker 1: thoughts on that in terms of the future of technology
Speaker 1: and and how it affects our access to power? Oh
Speaker 1: my gosh, I have rebel against the phrase democratizing data
Speaker 1: or democratizing science. What type of democracy are we talking
Speaker 1: about here? Are we talking about the American system of democracy,
Speaker 1: because the garbage fire that was the last election year
Speaker 1: should show that this is not a model by which
Speaker 1: we should follow. Any means of any past w equality.
Speaker 1: To preference the American system of democracy over other forms
Speaker 1: of democracy is a form of white colonial thinking. There
Speaker 1: were other forms of democracy that we need to consider,
Speaker 1: like indigenous systems of democracy that have long existed before
Speaker 1: the American system of democracy. We also have to think
Speaker 1: that any system that advocates for benefiting most is going
Speaker 1: to disenfranchise small, underrepresenting communities like our own, like indigenous peoples,
Speaker 1: it's going to continue to disenfranchise minority groups and substantiate
Speaker 1: those power and balances. Democracy does not necessarily mean equality
Speaker 1: or equity, and these definitions of equity should be community
Speaker 1: driven and they're culturally specific. They should not be determined
Speaker 1: by the dominant cultures. But let's also think carefully about
Speaker 1: equality and equity. We have a lot of d e
Speaker 1: I efforts, diversity inclusion and equity efforts across academia and
Speaker 1: across industries. And we get the diversity part and we
Speaker 1: get the inclusion part. Sure, you want our people's data,
Speaker 1: that's that's nothing new. The equity portion though is key,
Speaker 1: and equity is not equality. A seat at the table
Speaker 1: is not the same thing as a voice at the table. Yeah,
Speaker 1: you've done a lot, and I want to share that
Speaker 1: burden and that opportunity. We set up this show to
Speaker 1: encourage people to do things, and on the topic of
Speaker 1: balancing power and on the topic of data more specifically.
Speaker 1: But lay out your thoughts on what we should be
Speaker 1: doing as kindly as I can state this. If you
Speaker 1: are a member that has been historically empowered at this
Speaker 1: point in time, especially when it comes to topics related
Speaker 1: to racism and inequality, and I say this as kindly
Speaker 1: as I can, you need to sit down and shut
Speaker 1: up and listen to the scholars, the people of color,
Speaker 1: the communities and do what they recommend and follow their lead.
Speaker 1: Decision making authorities need to shift to those that have
Speaker 1: been historically disenfranchised. That's how we get changed. If you
Speaker 1: want to advocate for change, you also need to provide
Speaker 1: room for dissenting voices, even if it's hard to hear
Speaker 1: mm hmm. Thank you, Crystal so see so much for
Speaker 1: your time, your teachings, your talent, and your portmanteaus. I
Speaker 1: really appreciate you. Thank you that word too. Crystal wants
Speaker 1: people to listen. It's not enough just to raise awareness though,
Speaker 1: when we think back to the citizening principles, Crystal wants
Speaker 1: people to show up, but also to make space for
Speaker 1: those who haven't been able to show up, who haven't
Speaker 1: been able to citizen due to historical and systemic oppression. Now,
Speaker 1: as we're building out these new systems built on data
Speaker 1: and new technologies, we have to make sure we aren't
Speaker 1: repeating the old methods of extraction and exploitation and disenfranchisement.
Speaker 1: Neither a majority white government nor a majority white business
Speaker 1: should be determining the tribal membership status of an Indigenous person.
Speaker 1: That don't make any damn sense. We have this opportunity
Speaker 1: to close gaps and undo harms caused by justice sort
Speaker 1: of thinking, and start taking justice into account when we
Speaker 1: use data. And after reflecting on both of these conversations
Speaker 1: with Crystal and with Kasha, I think the answer to
Speaker 1: data justice actually goes both ways. Yeah, we need more
Speaker 1: diverse data sets, just like we need more diverse corporate boards,
Speaker 1: but not just that, you know, we also need to
Speaker 1: change the way corporations wield power, and we need a
Speaker 1: data ecosystem where people have agency over their data, specifically
Speaker 1: those people who have been cut out of or abused
Speaker 1: by our current system. One of our pillars of How
Speaker 1: to Citizen is restoring power to the people, and one
Speaker 1: of the biggest gaps of tech is that it's used
Speaker 1: to disempower folks from literally showing up for themselves and
Speaker 1: for others. Because how we get misrepresented in data and
Speaker 1: the effects that that can have on our choices. Both
Speaker 1: Kasha and Crystal show us examples of people taking that
Speaker 1: power back. When thinking about this show How to Citizen,
Speaker 1: I think we need to keep breathing new life into
Speaker 1: this citizen verb and apply the lessons of our guests
Speaker 1: and evolve as well. So citizen, what does that mean?
Speaker 1: I think it should also mean that we explicitly seek
Speaker 1: to distribute power and resources to those long excluded from
Speaker 1: systems of citizen it. Next week we dive into the
Speaker 1: Mystic and I learned about the link between chicken farms,
Speaker 1: blockchain logic, and tarot. I know that sounds like a
Speaker 1: word salad, but trust me, it's a dope conversation. Picture
Speaker 1: of the chicken how many steps it took? Because they're
Speaker 1: like a phenomener like All the Chicken Got It sent
Speaker 1: thousand steps in Let's Eat Chickens and blockchain Come on now,
Speaker 1: m And now it's that time in the episode where
Speaker 1: we share some actions that you can take. First, up
Speaker 1: a thinking exercise, ask yourself, how much is my data
Speaker 1: privacy worth to me? And how do I feel about
Speaker 1: non consensual surveillance based on my data? Now, adding the
Speaker 1: element of genetic information, how would you feel if any
Speaker 1: of your biological relatives donated genetic info tied to you
Speaker 1: that could be bought and sold. Next, I want you
Speaker 1: to get informed about exploitative data collection historically and right
Speaker 1: now we've linked to three articles in the show notes
Speaker 1: and on our site. And then finally, here are some
Speaker 1: ways to publicly participate. You can help empower or indigenous
Speaker 1: scientists working with tribal communities to ensure that the benefits
Speaker 1: of biomedicine and public health go to indigenous people by
Speaker 1: making a donation to the Native Biodata Consortium check them
Speaker 1: out online, And help protect yourself and slow the market
Speaker 1: for selling all of our data by installing the Global
Speaker 1: Privacy Control. This is a feature of certain web browsers
Speaker 1: that lets you signal to a site. You know, don't
Speaker 1: be trading all my information and it's backed by law.
Speaker 1: We've got linked to all this in the show notes
Speaker 1: and on our website at how to citizen dot com.
Speaker 1: Follow us on Instagram at how the Citizen and tag
Speaker 1: us in your post about data or exploitation or anything.
Speaker 1: We're not anything I don't want like posts about you
Speaker 1: trying to do a TikTok dance or something, So one
Speaker 1: or two of those might be fun make my life
Speaker 1: more interesting. Thanks for listening, and keep citizen. How the
Speaker 1: Citizen with baritune Day is a duction of I Heart
Speaker 1: Radio Podcasts and dust Light Productions. Our executive producers are
Speaker 1: Me Barrett tune Day, Thurston, Elizabeth Stewart, and Misha Usa.
Speaker 1: Our senior producer is Tamika Adams, our producer is Ali Kilts,
Speaker 1: and our assistant producer is Sam Paulson. Stephanie Cohen is
Speaker 1: our editor, Valentino Rivera is our senior engineer, and Matthew
Speaker 1: Laie is our apprentice. Original music by Andrew Eapen, with
Speaker 1: additional original music for season three from Andrew Clawson. Additional
Speaker 1: production help from Arwin Knicks. This episode was produced and
Speaker 1: sound designed by Tamika Adams. Special thanks to Joel Smith
Speaker 1: from I Heart Radio and Rachel Garcia at dust Light
Speaker 1: Production