December 16, 2021 • 48 mins
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.
Guest: Krystal Tsosie
Bio: Indigenous (Diné/Navajo) geneticist-ethicist at Vanderbilt University and incoming faculty at Arizona State. Co-Founder of the Native BioData Consortium.
Online: Native BioData Consortium website; Krystal’s TED talk and Twitter @kstsosie
Go to howtocitizen.com for transcripts, our email newsletter, and your citizen practice.
ACTIONS
- PERSONALLY REFLECT
What’s your data worth?
Ask yourself, “how much is my data privacy worth to me, and how do I feel about nonconsensual 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 nonconsensual 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!
Learn more about your ad-choices at https://www.iheartpodcastnetwork.com
See omnystudio.com/listener for privacy information.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Yeah. Welcome to How to Citizen with Baritune Day, a
podcast that reimagine 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,
(00:29):
we're continuing our conversation about data. Last time with Kasha,
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. And
(00:51):
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.
Oh no, you have to go all the way back
to the beginning. Cash is right. We can't just change
the algorithm. We have to go further back and examine
(01:13):
how data is collected in the first place. So consider
this episode Data Justice Part two. 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.
(01:33):
Its applications are endless, and 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,
(01:56):
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. Are geno that O G code.
(02:21):
The business around genetic data is huge, and I don't
mean just the twenty three and me tests you gave
your family member last holiday season. I'm talking about a
global industry worth billions of dollars. Bio data companies initially
set out to make genetic testing approachable and affordable for
the general public, and at first, these little tubes they
(02:43):
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. And when
we spit in the tube and contribute to these data sets, Yo,
it feels revelatory and super scientific. Like I found out
(03:05):
I was exactly twenty five point three percent Nigerian WHOA.
I even hosted a podcast partnered with twenty three in
Me called spit you might have heard it, and 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,
(03:25):
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. Who does data ultimately benefit? If
the data is not benefiting the people, the individuals, the
(03:47):
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. Crystal Socie is
an Indigenous meticists and bioethicist at the Native Biodata Consortium.
She used to work in precision medicine, developing targeted therapies
(04:07):
and treatments focused on cancer. But that experience led her
to co found the nonprofit Consortium with other Indigenous scientists,
and they built a network for Native researchers to collaborate
and protect their data heritage to already underserved and underrepresented
people's data could be part of what gives these communities
determination and agency over their own personhood and knowledge. Hello, Hello,
(04:34):
welcome to how does Citizen. Thank you so much for
the kind invite. You are so welcome. We're very excited
to have you as a part of Crystal joined me
from Phoenix, Arizona, which is the ancestral homeland of the
authom Pepash and Hagm people's. I joined her from northeast
Los Angeles, the homeland of the Tongua people's who are
also known as the Keeach. I want to start with
(04:55):
your ted talk called d n A is not our identity.
I in here to Vanderbilt to pursue a PhD 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? It is
direct to consumer genetic test kit. Now you probably have
(05:17):
been made the concept. You spend a hundred to two
hundred dollars, You spent a whole lot of saliva, more
than you ever thought you can ever produce in your
entire life, and you mail it out thirty days later
you get a result, and that result is a percent
estimation of ancestral background. First of all, nice work. And
(05:37):
that question of who am I is actually mired in
something else because according to ancestry d m A, the
number one question is why isn't my Native American ancestry
not showing up? Oh? Okay, I only have ten minutes,
not ten years, to unpack the assertedness of that claim,
(05:57):
or to tell you how dangerous it is to equate
indigenousity in a false way. And 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,
(06:19):
my DNA is my identity. That's what all the messaging says.
So tell me why you say our DNA is not
that our genetics are only half of the story. And
in fact, when we talk about health inequities and communities
of color, we really have to talk about the other
structural barriers that relate to health and disease. So, for instance,
(06:42):
with the COVID pandemic, there was a lot of press
about how these are rates for initially so much higher
and tribal communities such as my own, but those are
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
(07:04):
key preventative measure for curbing viral transmission. Also, the fact
that we have to drive ours one way just to
get to a preventative health clinic. Technology is limiting our
ability to detect these genetic differences across the genome. We
(07:24):
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. And
that's just talking about the health component. I haven't even
gotten into the genetic ancestral components. We'll get into that.
(07:46):
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 reject it in the health conversation. But you know,
as a Native American in particular, why are you rejecting
this idea of genetic determinism for ancestry. Well, let's think
(08:11):
back just a few years ago. This is Elizabeth Warren.
What are the facts you can absolutely have a Native
American ancestry in your pedigree. Oh my gosh, it feels
like actually forever ago. But 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
(08:36):
this a little bit further. Okay, let's go there, let's
get it. Let's go 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 US have largely not contributed their genetic
information to research or willingly to genetic ancestry tests. So
(09:02):
because of that, there's not that much information that links
specific genetic factors to a particularly US tribal nation. So
where do they get that information from. They get it
from openly available bio markers from large scale diversity projects
about twenty years ago. We're here to celebrate the completion
(09:23):
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 particularly
the Human Genome Diversity Project and also National Geographic Magazine
did the Genographic Project. And these were two projects that
(09:44):
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 base of the
planet due to colonial factors, no, not caring the fact
(10:05):
that our ways of life were disappearing. Now, we wanted
their genomes before we were dead and gone. And this
is like 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
(10:28):
area in Mexico in Central America, and they collected bio
markers 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
(10:52):
like twenty three and ancestry, they're using these openly sourced
bio markers from disinphra chries, disempowered, exploited indigenous groups that
are south of the US border, and they're using these
markers and also Asian biomarkers, which is a totally different
(11:13):
part of the world to infer statistically statements about US ancestry,
forgetting the fact that every single indigenous group has their
own distinct cultural and genetic histories. And those bio markers
that supposedly realified a story by Lizeth Warren, those biomarkers
(11:38):
don't really show anything except for the fact that she
perhaps had a statistical relationship with one of maybe fifty
people in the Mexico region of the globe. Has nothing
to do with the answert she is trying to claim.
And it's also horrible because Native American rights are tied
(12:01):
to blood quantum rules and 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.
(12:22):
But these are kinship structures derived from genealogy, not by blood.
It's just a misno more that they're called blood quantum rules.
But let's remember the reason why blood quantum rules started.
It was a means for deluding our rights and our
claims to sovereign resources that are actually supposed to be
(12:44):
given to us by treaty in exchange for our lands.
And by using these unequated rules, were deluding our rights
to those claims and then to reify it by these
genetic ancestry tests. It's just horrible. So I want to
pause and rewind for a few thoughts. The theft of
(13:07):
blood is literally vampiric, right, and the idea of continuing
to extract and exploit, which are fancy words for steel,
is a continuation of colonial behavior. So it sounds to
me like what you're describing as a as a vampiric
(13:27):
genetic colonialism. It's interesting that you use that term vampiric
because when these large scale diversity projects were announced, global
Indigenous populations at least six hundred of them actually went
to the United Nations and actually asked for the cessation
of these studies, and particularly called the genographic project a
(13:49):
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 felt like,
what do Indigenous people lose out on if they don't
(14:09):
have their data in their own hands, if they don't
have that data sovereignty. Well, first of all, if they
are not in charge of their data and they don't
have the same saying 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. But then
(14:31):
also we have to worry about whether or not d
NA claims to indigenousity will be undermined. So, for instance,
there's a number of scholars that are tracking descendants of
Mate populations and First Nations Canada people that claim to
be members of tribal communities but really have no evidence,
(14:55):
but are able to claim rights that should be only
to Indigenous people's. And what that effectively does is that
undermines the strength of communities because it's not like these
rights to resources are unlimited. It's very finite. There's like
a flip side version of this with the one drop
rule in US history about who's black, and that was
(15:19):
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.
And 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
(15:41):
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, right, self determination.
And so if this outside authority, which you've got mad
reason not to trust sto already now usurps your own
(16:02):
membership rules based on questionable and certainly in complete science,
that's real, messed up. That's that's where I landed. That's
all that built up to. That's just real. Know that
the cruelest joke is that US indigenous groups have taken
this system that was meant to delude us from our
rights to resources, and now we have used that same
(16:26):
system to define ourselves and even exclude others that should
be a part of our community. That is just intrinsic
colonialism reflected upon ourselves and the worst way possible. Wow Wow,
We'll be right back. What does your denay and Navajo
(16:52):
identity mean to you beyond your DNA? So if I
were to give my full introduction, Dini bazade I would
say can the Cheney, initially the Nain and then Crystal
Sissy Hitia. So what I have provided to you in
(17:16):
the first two three sentences as a description of my
four clans, so everyone that my mother, my father, and
my grandparents are related to. And then I introduced myself.
So I have given you my entire lineage through the
(17:37):
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 is my cousin
(18:00):
in a way, and so we don't have like 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. It also strikes me that the way we
(18:23):
introduce ourselves in dominant culture in the West is first person,
singular and disconnected from others. It's like, I'm very Toonday,
whatever next. And so your introduction and self definition was
in relation to those who may not even still be here.
(18:45):
I want to 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? 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
(19:09):
is my family history. My mother comes from Chanta, Arizona,
the northern region that's just pretty much closely Utah border.
And 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 US, but it's based in Phoenix.
(19:32):
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,
and anyway, I was like the only Native kid in
all my levels of school. It wasn't until I hit
(19:55):
really high school and college that I started interacting with
other Native American students, and the reception was cold. Like
I was non rez I was non res Translate that
for me, Oh, I was not born and raped. I
was on a reservation. I didn't have to say little experience.
(20:16):
I was not as hardcore as they were. I was
an apple right on the outside, white on the inside.
Oh you had apples, we had oreos. Black on the outside,
white on the inside. It's why is it always food?
I went to one of the top ranked biomedical research
universities in the world, and God, it was blatantly obvious that,
(20:42):
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 quarter like crisis. Okay, it was about that age,
(21:02):
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
wherewithal to make it as a scientist. And then also
just in terms of my own life land, if I
(21:24):
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 in you're young
and mid twenties, and that's something that I feel like
(21:46):
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 PhD in cancer by ology,
and if I were to invent something that fundamentally changed
cancer therapies, and whatever I invented went through all of
(22:11):
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, effluent
people first, long before it would benefit my own people.
(22:31):
As a brown person, and the sciences like 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
(22:52):
as a scientist and an activist in your introduction of me,
and being called a scientists activists is actually some thing 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
(23:15):
conversations about racism and inequities in science, and 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. We have to really question when we
(23:41):
over it economize science versus anti science, or even science
as being equated with objectivity, 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
(24:07):
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. Yeah, we all bring our
perspective to that stuff and have the idea there's a
(24:29):
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
(24:50):
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? So?
(25:12):
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. But then the question is to what end
and who actually benefits? And in the scenarios that I described,
(25:35):
twenty plus 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 three and me. Ancestry since seventeen they posted
(25:56):
every holiday quarter profits over a billion dollars, So this
is reflected of people wanting to gift direct to consumer
genetic ancestry tests as Christmas gifts, literally paying to give
up your data to feed the algorithms that these companies
(26:16):
are trying to develop. And then recently Ancestry was acquired
by a venture capitalist firm for six billion dollars. Now
twenty and three and Me also has interest in collecting
Bible markers for Native American people's. These companies and other
genetic ancestry companies have expressed interest in creating Native American
(26:42):
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 contribute to disease, the
lois hanging fruit has already been picked. We already know
(27:03):
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 like stay
tuned to the term like discovery, right, because these terms
(27:28):
are very intricately aligned with colonial language of discovery and
of our people's Hello Columbus. Yeah, exactly. We have to
really think about these direct parallels when we talk about
vanishing populations and we talk about discovering variation. So it's
(27:49):
interesting a lot of these drives for collecting data from
diverse groups is tied with these long term aims and
some today down the road, precision and genomic medicine is
going to improve health for all, but it's the pathway
is not clear. I want to give a really old
(28:12):
reference to a South Park episode? Can I do that? Yes?
You just you opened up my heart? I love South Park.
Let's go okay, So keep in mind I haven't watched
the South Park in years, but there's a classic episode
with the underpants gnomes co lactant kind of pants. Just phose? When?
So what's phase two? H what's phase two? Well? The
(28:35):
thrill of profit? I don't get it. Yes, yes, phase
one collect underpants, phase two question mark phase three profits. Yes, yeah,
it's the same thing with precision genomics. It's like step
(28:56):
one collect bio markers. From underrepresented people Step two question
marks Scept three. They're supposed to be some benefits to
prove to the individuals both no clear pathway and in actuality,
the real direct benefit is to drug companies because they
have a vested commercial interest in profiting from They're the
(29:16):
underpants gnomes of genetics. Oh my gosh, you gotta keep
using that. That's amazing. Crystal's got more thoughts on democracy
and self determination that real citizen talk after the break.
(29:40):
A lot of this 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?
Is she talking about my Facebook data? Right? The parallels
are really really obvious. But we're not talking about Facebook,
but we we still are in some ways that we're
(30:01):
still talking about self determination and power 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
(30:21):
that links you and everyone you're related to. Let's think
about third party ancestry test sites. So these are a
third party databases in which people can take their results
from twenty three and ancestry and then deposited into a
free database. And these databases are of interest for law
(30:44):
enforcement agencies, and in fact, law enforcement agencies they used
databases like this to identify the Golden State killer. The
answer was and always was going to be in the
d N A we knew we could and should solve
it using the most innovative DNA technology available at this time.
(31:08):
We found the needle in the haystack, and it was
right here in Sacramento. Now, think about our communities, communities
a color like yours and mine, or like indigenous communities
in particular. We have larger family sizes, smaller generation gaps
one person's DNA. I have a hundred first cousins alone.
(31:32):
I can't imagine how many third cousins I have. So
I would be upset if you know some person I've
never been met before decided to give up their information,
my information to a pharmaceutical company or another company. And
I'd be further upset if that information was used by
a federal agency to aid in racial genetic profiling. YO,
(31:55):
I'm right there with you, and I think the idea
that my scent 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,
(32:16):
then there's presumed compensation do 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. So, I know ephesis in general
(32:40):
do not like these conversations of attaching commercial value to
We're making ethicis mad? Okay? Yeah, But I 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
(33:02):
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. And we really should be talking
about benefit sharing as a means of profit sharing and
(33:23):
calling onto companies like drug companies that if you want
to collect our information and profit from it, then you
need to be sure that the people contributing that information
also benefit and if you can't give us a portion
of that profit, then we need to call into question
your practices. Yo, can you tell me about where you're
(33:48):
working now and what's the Native Bio Data Consortium. The
Native Bio Data Consertion is an Indigenous led research nonprofit
that started off as a biological and data repository. What
we wanted was to ensure that samples that were collected
(34:12):
from mimmunity members actually benefited those community members. And we
wanted to create a research institution in which the research
questions were driven by community members interests. And these type
of research questions probably more proximately relate to differences in
(34:33):
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.
They're the ones that understand that lifestyle and diet changes
(34:53):
that have been imposed upon them are going to contribute
to differences in health that perhaps the West turned starchy
diets are different from the more agrarian lifestyles that they
had for centuries beforehand. These are factors that are often
missing when we just look at precision medicine in a
genemic only framework, we're missing those cultural factors. If you're
(35:18):
asking the wrong question, it doesn't matter how precise your
answer is. Yes. What else are you spearheading? With the consortium?
We are also spearheading a lot of education initiatives. We
just finished a summer program called Indigit Data. Indigit Data,
(35:39):
I love that good job with the name, 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
(35:59):
and data science, but then also data ethics and what
it means to actually assert indigenous data sovereignties in their
own communities. And it was amazing. We had, like the
first parts of the morning were devoted to guest lectures
who are all Indigenous, who are all amazing scholars leading
their own fields using data science and their own particularly
(36:22):
unique ways. And then in the afternoon we talked coding,
like actually coded using environmental data that we collected and
sequenced from tribal lands, and it was just so cool
to get the students to sort of get their hands
dirty in a sense with the data, and it really
(36:45):
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 disempower mournment.
And if we want to change the narrative, then we
need to change the next generation of data scientists that
(37:08):
come from our communities. What's the overall goal of educating
indigenous data scientists. De Colonization has to be done by
historically colonized people, no one else. So it's really interesting
(37:30):
when you have white academics who are looking to scholars
of color to figure out how to de colonize their
syllabi and oh my gosh, I have a brief story.
So I did a Twitter conference called de Colonized DNA
and it was in lined with National DNA DA and
(37:50):
it was really to bring voices of disenfranchised communities and
representative scholars to talk about how janet mix could be
reductionistic and you know, reinforce these power dynamics that really
need to be changed. And after that, a lot of
white people and a lot of journalists who work for
(38:13):
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.
And I'm like, step down, give your place up, and
allow a scholar of color, a colonized person, to take
(38:36):
your place, because ultimately these narratives need to come from us,
not you. Unsurprisingly, none of those interviews made it depress.
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
(38:59):
selfish and of visual power. And 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
(39:24):
more available to all, which is good. What are your
thoughts on that in terms of the future of technology
and and how it affects our access to power? Oh
my gosh, I have rebel against the phrase democratizing data
or democratizing science. What type of democracy are we talking
(39:45):
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 past w equality.
To preference the American system of democracy over other forms
(40:06):
of democracy is a form of white colonial thinking. There
were 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
(40:26):
that any system that advocates for benefiting most is going
to disenfranchise small, underrepresenting communities like our own, like indigenous peoples,
it's going to continue to disenfranchise minority groups and substantiate
(40:48):
those power and balances. 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. But let's also think carefully about
(41:12):
equality and equity. We have a lot of d e
I 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 that's nothing new. The equity portion though is key,
(41:34):
and equity is not equality. A seat at the table
is not the same thing as a voice at the table. 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
(41:54):
balancing power and on the topic of data more specifically.
But lay out your thoughts on what we should be
doing 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
(42:17):
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.
(42:39):
Decision making authorities need to shift to those that have
been historically disenfranchised. That's how we get changed. If you
want to advocate for change, you also need to provide
room for dissenting voices, even if it's hard to hear
mm hmm. Thank you, Crystal so see so much for
(43:03):
your time, your teachings, your talent, and your portmanteaus. I
really appreciate you. Thank you that word too. Crystal wants
people to listen. It's not enough just to raise awareness though,
(43:25):
when we think back to the citizening principles, Crystal 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.
(43:50):
Neither a majority white government nor a majority white business
should be determining the tribal membership status of an Indigenous person.
That don't make any damn sense. We have this opportunity
to close gaps and undo harms caused by justice sort
of thinking, and start taking justice into account when we
use data. And after reflecting on both of these conversations
(44:14):
with Crystal and with Kasha, I think the answer to
data justice actually goes both ways. Yeah, we need more
diverse data sets, just like we need more diverse corporate boards,
but not just that, you know, we also need to
change the way corporations wield power, and we need a
data ecosystem where people have agency over their data, specifically
(44:39):
those people who have 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 how we get misrepresented in data and
(45:02):
the effects that that can have on our choices. Both
Kasha and Crystal 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
(45:25):
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 citizen it. Next week we dive into the
(45:45):
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. Picture
of the chicken how many steps it took? Because they're
like a phenomener like All the Chicken Got It sent
thousand steps in Let's Eat Chickens and blockchain Come on now,
(46:10):
m And 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, adding the
(46:32):
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. And then finally, here are some
(46:56):
ways to publicly participate. You can help empower or indigenous
scientists working with tribal communities to ensure that the benefits
of biomedicine and public health go to indigenous people 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
(47:19):
Privacy Control. This is a feature of certain web browsers
that lets you signal to a site. You know, don't
be trading all my information and it's backed by law.
We've got linked to all this in the show notes
and on our website at how to citizen dot com.
Follow us on Instagram at how the Citizen and tag
us in your post about data or exploitation or anything.
(47:43):
We're not anything I don't want like posts about you
trying to do a TikTok dance or something, So one
or two of those might be fun make my life
more interesting. Thanks for listening, and keep citizen. How the
Citizen with baritune Day is a duction of I Heart
Radio Podcasts and dust Light Productions. Our executive producers are
(48:05):
Me Barrett tune Day, Thurston, Elizabeth Stewart, and Misha Usa.
Our senior producer is Tamika Adams, our producer is Ali Kilts,
and our assistant producer is Sam Paulson. Stephanie Cohen is
our editor, Valentino Rivera is our senior engineer, and Matthew
Laie is our apprentice. Original music by Andrew Eapen, with
additional original music for season three from Andrew Clawson. Additional
(48:28):
production help from Arwin Knicks. This episode was produced and
sound designed by Tamika Adams. Special thanks to Joel Smith
from I Heart Radio and Rachel Garcia at dust Light
Production
Yeah. Welcome to How to Citizen with Baritune Day, a
podcast that reimagine 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,
(00:29):
we're continuing our conversation about data. Last time with Kasha,
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. And
(00:51):
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.
Oh no, you have to go all the way back
to the beginning. Cash is right. We can't just change
the algorithm. We have to go further back and examine
(01:13):
how data is collected in the first place. So consider
this episode Data Justice Part two. 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.
(01:33):
Its applications are endless, and 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,
(01:56):
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. Are geno that O G code.
(02:21):
The business around genetic data is huge, and I don't
mean just the twenty three and me tests you gave
your family member last holiday season. I'm talking about a
global industry worth billions of dollars. Bio data companies initially
set out to make genetic testing approachable and affordable for
the general public, and at first, these little tubes they
(02:43):
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. And when
we spit in the tube and contribute to these data sets, Yo,
it feels revelatory and super scientific. Like I found out
(03:05):
I was exactly twenty five point three percent Nigerian WHOA.
I even hosted a podcast partnered with twenty three in
Me called spit you might have heard it, and 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,
(03:25):
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. Who does data ultimately benefit? If
the data is not benefiting the people, the individuals, the
(03:47):
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. Crystal Socie is
an Indigenous meticists and bioethicist at the Native Biodata Consortium.
She used to work in precision medicine, developing targeted therapies
(04:07):
and treatments focused on cancer. But that experience led her
to co found the nonprofit Consortium with other Indigenous scientists,
and they built a network for Native researchers to collaborate
and protect their data heritage to already underserved and underrepresented
people's data could be part of what gives these communities
determination and agency over their own personhood and knowledge. Hello, Hello,
(04:34):
welcome to how does Citizen. Thank you so much for
the kind invite. You are so welcome. We're very excited
to have you as a part of Crystal joined me
from Phoenix, Arizona, which is the ancestral homeland of the
authom Pepash and Hagm people's. I joined her from northeast
Los Angeles, the homeland of the Tongua people's who are
also known as the Keeach. I want to start with
(04:55):
your ted talk called d n A is not our identity.
I in here to Vanderbilt to pursue a PhD 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? It is
direct to consumer genetic test kit. Now you probably have
(05:17):
been made the concept. You spend a hundred to two
hundred dollars, You spent a whole lot of saliva, more
than you ever thought you can ever produce in your
entire life, and you mail it out thirty days later
you get a result, and that result is a percent
estimation of ancestral background. First of all, nice work. And
(05:37):
that question of who am I is actually mired in
something else because according to ancestry d m A, the
number one question is why isn't my Native American ancestry
not showing up? Oh? Okay, I only have ten minutes,
not ten years, to unpack the assertedness of that claim,
(05:57):
or to tell you how dangerous it is to equate
indigenousity in a false way. And 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,
(06:19):
my DNA is my identity. That's what all the messaging says.
So tell me why you say our DNA is not
that our genetics are only half of the story. And
in fact, when we talk about health inequities and communities
of color, we really have to talk about the other
structural barriers that relate to health and disease. So, for instance,
(06:42):
with the COVID pandemic, there was a lot of press
about how these are rates for initially so much higher
and tribal communities such as my own, but those are
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
(07:04):
key preventative measure for curbing viral transmission. Also, the fact
that we have to drive ours one way just to
get to a preventative health clinic. Technology is limiting our
ability to detect these genetic differences across the genome. We
(07:24):
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. And
that's just talking about the health component. I haven't even
gotten into the genetic ancestral components. We'll get into that.
(07:46):
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 reject it in the health conversation. But you know,
as a Native American in particular, why are you rejecting
this idea of genetic determinism for ancestry. Well, let's think
(08:11):
back just a few years ago. This is Elizabeth Warren.
What are the facts you can absolutely have a Native
American ancestry in your pedigree. Oh my gosh, it feels
like actually forever ago. But 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
(08:36):
this a little bit further. Okay, let's go there, let's
get it. Let's go 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 US have largely not contributed their genetic
information to research or willingly to genetic ancestry tests. So
(09:02):
because of that, there's not that much information that links
specific genetic factors to a particularly US tribal nation. So
where do they get that information from. They get it
from openly available bio markers from large scale diversity projects
about twenty years ago. We're here to celebrate the completion
(09:23):
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 particularly
the Human Genome Diversity Project and also National Geographic Magazine
did the Genographic Project. And these were two projects that
(09:44):
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 base of the
planet due to colonial factors, no, not caring the fact
(10:05):
that our ways of life were disappearing. Now, we wanted
their genomes before we were dead and gone. And this
is like 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
(10:28):
area in Mexico in Central America, and they collected bio
markers 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
(10:52):
like twenty three and ancestry, they're using these openly sourced
bio markers from disinphra chries, disempowered, exploited indigenous groups that
are south of the US border, and they're using these
markers and also Asian biomarkers, which is a totally different
(11:13):
part of the world to infer statistically statements about US ancestry,
forgetting the fact that every single indigenous group has their
own distinct cultural and genetic histories. And those bio markers
that supposedly realified a story by Lizeth Warren, those biomarkers
(11:38):
don't really show anything except for the fact that she
perhaps had a statistical relationship with one of maybe fifty
people in the Mexico region of the globe. Has nothing
to do with the answert she is trying to claim.
And it's also horrible because Native American rights are tied
(12:01):
to blood quantum rules and 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.
(12:22):
But these are kinship structures derived from genealogy, not by blood.
It's just a misno more that they're called blood quantum rules.
But let's remember the reason why blood quantum rules started.
It was a means for deluding our rights and our
claims to sovereign resources that are actually supposed to be
(12:44):
given to us by treaty in exchange for our lands.
And by using these unequated rules, were deluding our rights
to those claims and then to reify it by these
genetic ancestry tests. It's just horrible. So I want to
pause and rewind for a few thoughts. The theft of
(13:07):
blood is literally vampiric, right, and the idea of continuing
to extract and exploit, which are fancy words for steel,
is a continuation of colonial behavior. So it sounds to
me like what you're describing as a as a vampiric
(13:27):
genetic colonialism. It's interesting that you use that term vampiric
because when these large scale diversity projects were announced, global
Indigenous populations at least six hundred of them actually went
to the United Nations and actually asked for the cessation
of these studies, and particularly called the genographic project a
(13:49):
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 felt like,
what do Indigenous people lose out on if they don't
(14:09):
have their data in their own hands, if they don't
have that data sovereignty. Well, first of all, if they
are not in charge of their data and they don't
have the same saying 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. But then
(14:31):
also we have to worry about whether or not d
NA claims to indigenousity will be undermined. So, for instance,
there's a number of scholars that are tracking descendants of
Mate populations and First Nations Canada people that claim to
be members of tribal communities but really have no evidence,
(14:55):
but are able to claim rights that should be only
to Indigenous people's. And what that effectively does is that
undermines the strength of communities because it's not like these
rights to resources are unlimited. It's very finite. There's like
a flip side version of this with the one drop
rule in US history about who's black, and that was
(15:19):
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.
And 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
(15:41):
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, right, self determination.
And so if this outside authority, which you've got mad
reason not to trust sto already now usurps your own
(16:02):
membership rules based on questionable and certainly in complete science,
that's real, messed up. That's that's where I landed. That's
all that built up to. That's just real. Know that
the cruelest joke is that US indigenous groups have taken
this system that was meant to delude us from our
rights to resources, and now we have used that same
(16:26):
system to define ourselves and even exclude others that should
be a part of our community. That is just intrinsic
colonialism reflected upon ourselves and the worst way possible. Wow Wow,
We'll be right back. What does your denay and Navajo
(16:52):
identity mean to you beyond your DNA? So if I
were to give my full introduction, Dini bazade I would
say can the Cheney, initially the Nain and then Crystal
Sissy Hitia. So what I have provided to you in
(17:16):
the first two three sentences as a description of my
four clans, so everyone that my mother, my father, and
my grandparents are related to. And then I introduced myself.
So I have given you my entire lineage through the
(17:37):
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 is my cousin
(18:00):
in a way, and so we don't have like 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. It also strikes me that the way we
(18:23):
introduce ourselves in dominant culture in the West is first person,
singular and disconnected from others. It's like, I'm very Toonday,
whatever next. And so your introduction and self definition was
in relation to those who may not even still be here.
(18:45):
I want to 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? 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
(19:09):
is my family history. My mother comes from Chanta, Arizona,
the northern region that's just pretty much closely Utah border.
And 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 US, but it's based in Phoenix.
(19:32):
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,
and anyway, I was like the only Native kid in
all my levels of school. It wasn't until I hit
(19:55):
really high school and college that I started interacting with
other Native American students, and the reception was cold. Like
I was non rez I was non res Translate that
for me, Oh, I was not born and raped. I
was on a reservation. I didn't have to say little experience.
(20:16):
I was not as hardcore as they were. I was
an apple right on the outside, white on the inside.
Oh you had apples, we had oreos. Black on the outside,
white on the inside. It's why is it always food?
I went to one of the top ranked biomedical research
universities in the world, and God, it was blatantly obvious that,
(20:42):
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 quarter like crisis. Okay, it was about that age,
(21:02):
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
wherewithal to make it as a scientist. And then also
just in terms of my own life land, if I
(21:24):
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 in you're young
and mid twenties, and that's something that I feel like
(21:46):
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 PhD in cancer by ology,
and if I were to invent something that fundamentally changed
cancer therapies, and whatever I invented went through all of
(22:11):
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, effluent
people first, long before it would benefit my own people.
(22:31):
As a brown person, and the sciences like 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
(22:52):
as a scientist and an activist in your introduction of me,
and being called a scientists activists is actually some thing 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
(23:15):
conversations about racism and inequities in science, and 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. We have to really question when we
(23:41):
over it economize science versus anti science, or even science
as being equated with objectivity, 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
(24:07):
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. Yeah, we all bring our
perspective to that stuff and have the idea there's a
(24:29):
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
(24:50):
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? So?
(25:12):
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. But then the question is to what end
and who actually benefits? And in the scenarios that I described,
(25:35):
twenty plus 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 three and me. Ancestry since seventeen they posted
(25:56):
every holiday quarter profits over a billion dollars, So this
is reflected of people wanting to gift direct to consumer
genetic ancestry tests as Christmas gifts, literally paying to give
up your data to feed the algorithms that these companies
(26:16):
are trying to develop. And then recently Ancestry was acquired
by a venture capitalist firm for six billion dollars. Now
twenty and three and Me also has interest in collecting
Bible markers for Native American people's. These companies and other
genetic ancestry companies have expressed interest in creating Native American
(26:42):
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 contribute to disease, the
lois hanging fruit has already been picked. We already know
(27:03):
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 like stay
tuned to the term like discovery, right, because these terms
(27:28):
are very intricately aligned with colonial language of discovery and
of our people's Hello Columbus. Yeah, exactly. We have to
really think about these direct parallels when we talk about
vanishing populations and we talk about discovering variation. So it's
(27:49):
interesting a lot of these drives for collecting data from
diverse groups is tied with these long term aims and
some today down the road, precision and genomic medicine is
going to improve health for all, but it's the pathway
is not clear. I want to give a really old
(28:12):
reference to a South Park episode? Can I do that? Yes?
You just you opened up my heart? I love South Park.
Let's go okay, So keep in mind I haven't watched
the South Park in years, but there's a classic episode
with the underpants gnomes co lactant kind of pants. Just phose? When?
So what's phase two? H what's phase two? Well? The
(28:35):
thrill of profit? I don't get it. Yes, yes, phase
one collect underpants, phase two question mark phase three profits. Yes, yeah,
it's the same thing with precision genomics. It's like step
(28:56):
one collect bio markers. From underrepresented people Step two question
marks Scept three. They're supposed to be some benefits to
prove to the individuals both no clear pathway and in actuality,
the real direct benefit is to drug companies because they
have a vested commercial interest in profiting from They're the
(29:16):
underpants gnomes of genetics. Oh my gosh, you gotta keep
using that. That's amazing. Crystal's got more thoughts on democracy
and self determination that real citizen talk after the break.
(29:40):
A lot of this 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?
Is she talking about my Facebook data? Right? The parallels
are really really obvious. But we're not talking about Facebook,
but we we still are in some ways that we're
(30:01):
still talking about self determination and power 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
(30:21):
that links you and everyone you're related to. Let's think
about third party ancestry test sites. So these are a
third party databases in which people can take their results
from twenty three and ancestry and then deposited into a
free database. And these databases are of interest for law
(30:44):
enforcement agencies, and in fact, law enforcement agencies they used
databases like this to identify the Golden State killer. The
answer was and always was going to be in the
d N A we knew we could and should solve
it using the most innovative DNA technology available at this time.
(31:08):
We found the needle in the haystack, and it was
right here in Sacramento. Now, think about our communities, communities
a color like yours and mine, or like indigenous communities
in particular. We have larger family sizes, smaller generation gaps
one person's DNA. I have a hundred first cousins alone.
(31:32):
I can't imagine how many third cousins I have. So
I would be upset if you know some person I've
never been met before decided to give up their information,
my information to a pharmaceutical company or another company. And
I'd be further upset if that information was used by
a federal agency to aid in racial genetic profiling. YO,
(31:55):
I'm right there with you, and I think the idea
that my scent 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,
(32:16):
then there's presumed compensation do 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. So, I know ephesis in general
(32:40):
do not like these conversations of attaching commercial value to
We're making ethicis mad? Okay? Yeah, But I 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
(33:02):
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. And we really should be talking
about benefit sharing as a means of profit sharing and
(33:23):
calling onto companies like drug companies that if you want
to collect our information and profit from it, then you
need to be sure that the people contributing that information
also benefit and if you can't give us a portion
of that profit, then we need to call into question
your practices. Yo, can you tell me about where you're
(33:48):
working now and what's the Native Bio Data Consortium. The
Native Bio Data Consertion is an Indigenous led research nonprofit
that started off as a biological and data repository. What
we wanted was to ensure that samples that were collected
(34:12):
from mimmunity members actually benefited those community members. And we
wanted to create a research institution in which the research
questions were driven by community members interests. And these type
of research questions probably more proximately relate to differences in
(34:33):
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.
They're the ones that understand that lifestyle and diet changes
(34:53):
that have been imposed upon them are going to contribute
to differences in health that perhaps the West turned starchy
diets are different from the more agrarian lifestyles that they
had for centuries beforehand. These are factors that are often
missing when we just look at precision medicine in a
genemic only framework, we're missing those cultural factors. If you're
(35:18):
asking the wrong question, it doesn't matter how precise your
answer is. Yes. What else are you spearheading? With the consortium?
We are also spearheading a lot of education initiatives. We
just finished a summer program called Indigit Data. Indigit Data,
(35:39):
I love that good job with the name, 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
(35:59):
and data science, but then also data ethics and what
it means to actually assert indigenous data sovereignties in their
own communities. And it was amazing. We had, like the
first parts of the morning were devoted to guest lectures
who are all Indigenous, who are all amazing scholars leading
their own fields using data science and their own particularly
(36:22):
unique ways. And then in the afternoon we talked coding,
like actually coded using environmental data that we collected and
sequenced from tribal lands, and it was just so cool
to get the students to sort of get their hands
dirty in a sense with the data, and it really
(36:45):
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 disempower mournment.
And if we want to change the narrative, then we
need to change the next generation of data scientists that
(37:08):
come from our communities. What's the overall goal of educating
indigenous data scientists. De Colonization has to be done by
historically colonized people, no one else. So it's really interesting
(37:30):
when you have white academics who are looking to scholars
of color to figure out how to de colonize their
syllabi and oh my gosh, I have a brief story.
So I did a Twitter conference called de Colonized DNA
and it was in lined with National DNA DA and
(37:50):
it was really to bring voices of disenfranchised communities and
representative scholars to talk about how janet mix could be
reductionistic and you know, reinforce these power dynamics that really
need to be changed. And after that, a lot of
white people and a lot of journalists who work for
(38:13):
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.
And I'm like, step down, give your place up, and
allow a scholar of color, a colonized person, to take
(38:36):
your place, because ultimately these narratives need to come from us,
not you. Unsurprisingly, none of those interviews made it depress.
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
(38:59):
selfish and of visual power. And 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
(39:24):
more available to all, which is good. What are your
thoughts on that in terms of the future of technology
and and how it affects our access to power? Oh
my gosh, I have rebel against the phrase democratizing data
or democratizing science. What type of democracy are we talking
(39:45):
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 past w equality.
To preference the American system of democracy over other forms
(40:06):
of democracy is a form of white colonial thinking. There
were 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
(40:26):
that any system that advocates for benefiting most is going
to disenfranchise small, underrepresenting communities like our own, like indigenous peoples,
it's going to continue to disenfranchise minority groups and substantiate
(40:48):
those power and balances. 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. But let's also think carefully about
(41:12):
equality and equity. We have a lot of d e
I 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 that's nothing new. The equity portion though is key,
(41:34):
and equity is not equality. A seat at the table
is not the same thing as a voice at the table. 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
(41:54):
balancing power and on the topic of data more specifically.
But lay out your thoughts on what we should be
doing 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
(42:17):
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.
(42:39):
Decision making authorities need to shift to those that have
been historically disenfranchised. That's how we get changed. If you
want to advocate for change, you also need to provide
room for dissenting voices, even if it's hard to hear
mm hmm. Thank you, Crystal so see so much for
(43:03):
your time, your teachings, your talent, and your portmanteaus. I
really appreciate you. Thank you that word too. Crystal wants
people to listen. It's not enough just to raise awareness though,
(43:25):
when we think back to the citizening principles, Crystal 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.
(43:50):
Neither a majority white government nor a majority white business
should be determining the tribal membership status of an Indigenous person.
That don't make any damn sense. We have this opportunity
to close gaps and undo harms caused by justice sort
of thinking, and start taking justice into account when we
use data. And after reflecting on both of these conversations
(44:14):
with Crystal and with Kasha, I think the answer to
data justice actually goes both ways. Yeah, we need more
diverse data sets, just like we need more diverse corporate boards,
but not just that, you know, we also need to
change the way corporations wield power, and we need a
data ecosystem where people have agency over their data, specifically
(44:39):
those people who have 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 how we get misrepresented in data and
(45:02):
the effects that that can have on our choices. Both
Kasha and Crystal 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
(45:25):
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 citizen it. Next week we dive into the
(45:45):
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. Picture
of the chicken how many steps it took? Because they're
like a phenomener like All the Chicken Got It sent
thousand steps in Let's Eat Chickens and blockchain Come on now,
(46:10):
m And 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, adding the
(46:32):
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. And then finally, here are some
(46:56):
ways to publicly participate. You can help empower or indigenous
scientists working with tribal communities to ensure that the benefits
of biomedicine and public health go to indigenous people 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
(47:19):
Privacy Control. This is a feature of certain web browsers
that lets you signal to a site. You know, don't
be trading all my information and it's backed by law.
We've got linked to all this in the show notes
and on our website at how to citizen dot com.
Follow us on Instagram at how the Citizen and tag
us in your post about data or exploitation or anything.
(47:43):
We're not anything I don't want like posts about you
trying to do a TikTok dance or something, So one
or two of those might be fun make my life
more interesting. Thanks for listening, and keep citizen. How the
Citizen with baritune Day is a duction of I Heart
Radio Podcasts and dust Light Productions. Our executive producers are
(48:05):
Me Barrett tune Day, Thurston, Elizabeth Stewart, and Misha Usa.
Our senior producer is Tamika Adams, our producer is Ali Kilts,
and our assistant producer is Sam Paulson. Stephanie Cohen is
our editor, Valentino Rivera is our senior engineer, and Matthew
Laie is our apprentice. Original music by Andrew Eapen, with
additional original music for season three from Andrew Clawson. Additional
(48:28):
production help from Arwin Knicks. This episode was produced and
sound designed by Tamika Adams. Special thanks to Joel Smith
from I Heart Radio and Rachel Garcia at dust Light
Production
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