EPISODE 4

DECODING ANCESTRY – RACE IS NOT GENETIC

CO-HOST: DR. SHAWN HERCULES, POSTDOCTORAL RESEARCHER AT MCMASTER UNIVERSITY GUEST: DR. JANINA M. JEFF, AMERICAN GENETICIST AND EXECUTIVE PRODUCER OF ‘IN THOSE GENES’

“RACE AND GENETIC ANCESTRY ARE TWO DIFFERENT THINGS”

– DR. JANINA JEFF

IN THIS EPISODE

What exactly is the relationship between race and genetics? And where do concepts of ancestry and identity enter the conversation? In the realm of genomics, these are myths waiting to be busted.

“What does the information stored in our genomes tell us about our past and our present?” Dr. Kaylee Byers and Co-host Dr. Shawn Hercules join forces to break into this fundamental question of science, ancestry and race. First, they speak with “Genet-SIS” and Executive Producer of the podcast In Those Genes, Dr. Janina Jeff (A.K.A. “Dr.J²”) about how race is really a social construct. Together, they delve into the important distinctions we must make between ancestry and race in order to better understand our biology.

Dr. Hercules discusses their research into advanced breast cancer in Caribbean and West African women and how it relates to hereditary genes. This opens the conversation up to how scientists need to be mindful when working with marginalized communities to extract genetic information. Finally, globe-trotting scientist and ancient DNA expert Dr. Eske Willerslev, shares stories of his intercultural journeys to understand human ancestry and migration around the world. Join us for this fascinating episode about race, ancestry, and genomics without borders.

HIGHLIGHTS

00:00:31

“Anish takes a DNA test”

00:05:21

“Dr. Janina Jeff introduces her hip-hop genetics show”

00:07:12

“Race is a social construct created during the enlightenment period”

00:17:42

“Dr. Eske Willerslev finds a bloody piece of hair”

TRANSCRIPT

[00:00:00] Producer: Test test, test testing,

[00:00:08] Dr. Kaylee Byers: kinda excited. that’s Anish and she’s agreed to help us with a little experiment. I’m currently heading

[00:00:15] Anish: down to the mailbox to get my package.

[00:00:18] Elevator: Main floor.

[00:00:25] Dr. Kaylee Byers: The kit in her hands could hold some answers to questions she’s had for quite some time.

[00:00:31] Anish: It’s like, finally, I get to know who I am. I’m opening up the package! The DNA testing kit.

Read Transcript

[00:00:41] Dr. Kaylee Byers: DNA testing kits aren’t all that new. They’ve been making the rounds in the public consciousness with DNA kits, not only for people, but for our pets too. Instead of being restricted to secure science labs and forensic whodunnit, murder mystery shows. With a quick online order, these kits have moved from the lab bench…

[00:01:05] Anish: Let’s get started!

[00:01:06] Dr. Kaylee Byers: …to our kitchen counters.

[00:01:07] Anish: Yeah, it’s like I’m going for a lab test. For all I know I’m just like south Asian and I’m from the country of India.

[00:01:15] Dr. Kaylee Byers: But with the advent of these genomic tools and increased access to them, I’m curious as to what it means to have this biological blueprint. And how it has become entwined with our sense of identity.

[00:01:30] Streeter #1: So would I take an ancestry test? So I think I did, and I was just like confused. I was like, I didn’t know I was like Persian or whatever.

[00:01:38] Streeter #2: Yes I would take an ancestry test. I don’t know my biological grandfather.

[00:01:41] Streeter #3: I would like to know my history and find out if I have more aunts and uncles.

[00:01:45] Streeter #4: I’m always curious to learn where my genealogy comes from. My grandmother was adopted, so knowing her family background is nice to know.

[00:01:55] Dr. Kaylee Byers: How are DNA hits like these influencing our existing understanding and perceptions about ancestry, and race.

You’re listening to ‘Nice Genes!’, a show all about unraveling the fascinating world of genomics, sponsored by Genome British Columbia. I’m your host, Dr. Kaylee Byers, your resident Dana Scully in genomics investigations. The question we’ll be asking today, is one where society and science intersect: when it comes to our DNA, what does the information stored in our genomes tell us about our past and our present?

[00:02:33] Dr. Shawn Hercules: Yeah.

[00:02:35] Dr. Kaylee Byers: Wow.

[00:02:36] Dr. Shawn Hercules: Okay, okay.

[00:02:37] Dr. Kaylee Byers: To dive into this question with me, I’ve called in Dr. Shawn Hercules…

[00:02:41] Dr. Shawn Hercules: Do that, do that again, without me interrupting.

[00:02:43] Dr. Kaylee Byers: …whose own research at the interface of genomics, health and ancestry, has revealed why these questions are so important. Hey Shawn, thanks for popping by.

[00:02:53] Dr. Shawn Hercules: Hey, Kaylee. Thanks for having me, so happy to be here.

[00:02:56] Dr. Kaylee Byers: An absolute delight. So Shawn, to start off, can you tell us a bit about yourself and your work?

[00:03:03] Dr. Shawn Hercules: Yeah, so, I recently finished my PhD and I’m currently a post doctoral researcher at Princess Margaret Cancer Centre, in Toronto. However, for my PhD, I was, uh, working on an aggressive form of breast cancer called triple negative breast cancer.

[00:03:20] Dr. Kaylee Byers: And so we are going to dive a little bit more into your work in a moment, but as we heard off the top, we are not just on this journey together today, but we’re also following Anish as she uses a DNA testing kit to explore her own ancestry.

[00:03:36] Anish: Okay. Let’s get to it.

[00:03:38] Dr. Kaylee Byers: Anish is about to move onto the most exciting or least savory step of the process. I guess it kind of depends on how you feel about it.

[00:03:48] Anish: I didn’t know, my ancestors lived in my saliva. I feel scared sending this in now. Like, I don’t know where this could go. That’s what I’m feeling. Where could this go? I am heading to the mailbox to drop this off. Alright, opening up the mailbox. Placing it in. That’s that.

[00:04:20] Dr. Shawn Hercules: All right. So it sounds like the package is in the post it’s off to the lab and we’ll be following along to find out Anish’s results. But Kaylee,

[00:04:30] Dr. Kaylee Byers: Yeah?

[00:04:30] Dr. Shawn Hercules: I was so excited about our episode today, so, I called in someone else to join us.

[00:04:36] Dr. Kaylee Byers: Ooh, I love a full house!

[00:04:37] Dr. Shawn Hercules: Yeah! I’d like to welcome the host and executive producer of hip hop inspired, science podcast that I love to listen to, called ‘In Those Genes’. And self-identified Genet-SIS: Dr. Janina. Jeff. Thank you for coming.

[00:04:57] Dr. Janina Jeff: Hey guys!

[00:04:59] Dr. Kaylee Byers: Dr. Jeff, thank you so much for joining us.

[00:05:02] Dr. Janina Jeff: Yes. Thanks for inviting me.

[00:05:04] Dr. Shawn Hercules: All right, so we’ve got some questions for you, Janina. I am a big fan of your show. I listen to it when I’m walking to and from work, but perhaps some listeners haven’t had a chance to hit ‘follow’ just yet or find your podcast. So can you tell us about your podcast? Like what’s the premise?

[00:05:21] Dr. Janina Jeff: Yeah. Uh, so the show is called ‘In Those Genes’, a hip hop inspire podcast that uses genetics to decode the laws, histories, and futures of African descendants as well, somewhat comedic relief podcast, in addition to teaching genetics. And most importantly, we like to educate the community.

[00:05:41] Dr. Kaylee Byers: Very much a great listen and highly recommend everyone to go follow. And Janina, your work in genomics isn’t just restricted to podcasting. Can you tell us a little bit about the work you do and the type of research you specialize in?

[00:05:54] Dr. Janina Jeff: Yeah, so I am a bioinformatics scientist. My PhD was actually on cardiovascular genetics in, particularly, populations that have a mixture of, uh, ancestry from two different continents, at least. And so my PhD was focused on that. In my post doc [postdoctoral research], I went deeper into pop gen [population genetics] work and really started to focus on, uh, the genetic signatures that could explain health disparities in different populations that have different ancestry. Now I work on a different side of, of research I should say. I work on the technology side. So I am a staff scientist at Illumina and at my work at Illumina, I actually get to create products for different countries, different populations. And I get to travel there sometimes too, which is really, really cool.

[00:06:44] Dr. Kaylee Byers: Yeah. That is, one of the things we really wanna do on the show is some genetic myth busting. So, Janina we’re discussing what DNA can or can’t tell us about our identities. And, particularly when it comes to identities around ancestry or race. So maybe we could start there. So what do you feel are maybe, the perceptions or misconceptions, that people have about — what our DNA can reveal about our ancestry or race?

[00:07:12] Dr. Janina Jeff: Yeah, so I guess the, the biggest thing I should say is that, race and genetic ancestry are, are two different things, right? So, race is a social construct that was created hundreds of years ago during the enlightenment period, where these European scientists are trying to classify things in a, a part of science, we call taxonomy. And this is also during the colonialism… So, really trying to justify a reason to differentiate or create a system of hierarchy between humans. Genetic ancestry is — where we are trying to understand, from a person in present day, who their ancestors were. So I guess the first thing I would say, is that your genetic ancestry cannot tell you anything about your race, because race is a social construct and genetic ancestry is a genetic term that we use to describe our ancestors. And I think a lot of times we ascribe race to be our physical appearance and our experience in the world, which, we can’t really figure that out in our genomes.

[00:08:20] Dr. Shawn Hercules: That’s a really great point. And, you know, we see lots of tensions between our perception of things like race versus, you know, what we see in science. Um, can you maybe talk a bit more about that? Like, are our genomic portraits really so different from each other when it comes to things like race?

[00:08:38] Dr. Janina Jeff: Yeah. So. I, this is my favorite bar to drop, which is that genetically we are 99.9% the same. Genetically, we are very similar. When people are trying to describe what has been confounded as race in genetics, they’re really trying to describe who their ancestors were and where those ancestors lived, in the last couple of hundred years. But, all of us share a common ancestor and that’s the first modern day human. A person, geneticists call ‘Mitochondrial Eve’, a person that we call on the podcast ‘Big Mama’, you know, we all share a part of her DNA. That is something that I try to remind people all the time; there are a lot of physical traits that we see, and we think, oh my God, these differences must be so large, but these differences lie within that 0.1% of our genome, it highlights two things. It highlights, we are more alike than we are unalike.

[00:09:36] Maya Angelou: We are more alike, my friends, than we are unalike.

[00:09:42] Dr. Janina Jeff: Infamous quote I like to say from Maya Angelou, who I think was like a closeted ‘genet-sis’. So that 0.1% that makes us different is one part of it. And then within that 0.1%, we also have different things happening in our genomes, like the way our genes interact with other genes or the way our genes interact with the environment and all of that really highlights, the beauty and the diversity in that 0.1%.

If we think about the 0.1%, that’s been used to mostly divide us socially, we could also think about the 0.1% as this beautiful mystery. Really understand — well, what does this 0.1% mean? How is it different from you versus me? And how can I most importantly celebrate it, um, versus, you know, making some divisive claims.

[00:10:40] Dr. Kaylee Byers: I wanna follow up with something that you’ve mentioned briefly in there, which is also, you know, the complexity of the genome. And there’s some scientific discussion around how not race, but racism might impact our genomes. So, less access to healthcare and community resources in racialized communities. What are we learning about epigenetics? Like sort of ‘what it is’, and how might these social stressors have a way of showing up in the genome?

[00:11:07] Dr. Janina Jeff: So, epigenetics is, you can think about epigenetics as like, the changes that are being made in our genome in real time. So a lot of this happens every day. We are turning genes on and turning genes off, throughout the day.

Epigenetics is really looking at gene expression in different environments. So environment there is, is not what, what you may think of, like ‘I go outside’, but more so kind of like, um, the cells in, in different states. So one thing that is, um, really important to note is that scientists are still trying to figure out and really understand how, and if, trauma and stress can be passed on generation to generation. Um, but a lot of cardiovascular disease, diabetes, a lot of these diseases, um, the actual genetic component in most people is relatively small. And if we take that relatively small amount, we might be able to understand if there are some unique signatures that we only see in people who share a certain common ancestor. When we’re talking about social determinants of health, if we are talking about stressors you experience like systemic racism. Um, there’s a paper that was trying to use AI and algorithms to kind of predict whether patients should be defaulted into a program, um, that would give them extra care.

[00:12:37] Robot: Approved.

[00:12:38] Dr. Janina Jeff: And, the program was selecting patients based on how much their medical expenditure was over a course of a year. And what they found was that if we were comparing Black or white patients, that Black patients had lower medical expenditure, so they weren’t being defaulted into this program,

[00:12:58] Robot: Rejected.

[00:12:59] Dr. Janina Jeff: but they were actually just as sick. Which means that they, one, couldn’t afford interventions, or also very likely, they weren’t even given these interventions as options. And so these are things that start to create, these disparities. And I think it becomes less and less clear, what is genetic? What’s not genetic? And most importantly, there’s a, there’s a spiral effect, right? If you’re not being treated for something, then your condition worsens. If your condition worsens, you’re more likely to develop other conditions. So like it’s this whole spiral, you know, event. And so. While race is not real, it is a social construct, it is very much so a real, tangible thing that we can see in medicine. It has real consequences.

[00:13:52] Dr. Kaylee Byers: DNA testing kits have this potential to tell us about our ancestry. Do you think that these kits are furthering our understanding about who we are?

[00:14:01] Dr. Janina Jeff: I think that it will mean something different to different people. I have not done a commercial genetic ancestry test. And when I think about my own identity, I think about, well, what do I consider my identity? What do I consider the things I know? And what I don’t know. And, my identity is very much so, uh, about the culture and about the community and about the family that I was fortunate enough to be raised with. Does everyone feel this way? No. Genetic ancestry testing can tell you, literally about the biological connections you have to other individuals. Um, what it cannot tell you is, it cannot tell you if you’re not, if you’re not related to the person who grew up as your father, that that person is your father, right? That’s only something that you can experience, and that’s a huge part of your identity, but there are some powerful things we can learn from genetic ancestry testing. And there are some limitations.

[00:15:02] Dr. Kaylee Byers: Amazing. We’re gonna pause for a moment to go to a story that takes us back. And I mean, way back.

[00:15:13] Dr. Eske Willerslev: When you are, when you are paddling these rivers in, in Northeastern Siberia, I mean, where there hasn’t been humans for thousands of years or potentially ever

[00:15:25] Dr. Kaylee Byers: That’s scientist, and adventurer, Dr. Eske Willerslev. You may recall him from our last episode on environmental DNA or eDNA. He used it to find elusive animal species.

[00:15:38] Dr. Eske Willerslev: It’s pretty amazing. Uh, and, uh,

[00:15:40] Dr. Shawn Hercules: Pioneering eDNA is just one notch in his scientific belt. When he was a boy, he always had another lifelong dream.

[00:15:50] Dr. Eske Willerslev: I mean, I, I grew up in Denmark, just north of Copenhagen and when I was a kid, uh, I spent a lot of time in the woods of Sweden. I wanted to be, become an adventurer and I went to Siberia.

[00:16:05] Dr. Shawn Hercules: And the start to realizing that dream really began in the fresh cold Siberian ear of Northern Russia.

[00:16:13] Dr. Eske Willerslev: You can say a lot of the questions that I have been working on are really things that I was interested in as a child or as, uh, when I was sitting, you know, in the canoe, in the Siberian, uh, wilderness.

[00:16:28] Dr. Kaylee Byers: Now fast forward a couple years, 33 year old Eske, becomes one of the youngest professors in Denmark at the time.

[00:16:36] Dr. Shawn Hercules: Technology was just emerging that can map the entire human genome. So Eske had another bright idea.

[00:16:45] Dr. Eske Willerslev: Let me see how I should start this. Yes. I woke up at night. In the middle of a night with a vision and the vision was, uh, you know, to create the first ancient human genome. And when you’re talking about an ancient human genome, I mean it’s tiny fragments, but enough to show it’s possible. And what is interesting is we did it on a hair sample from Greenland, which was the oldest human evidence from Greenland it’s 4,000 years old. There was at the time, discussion that you know, who were the first people in the Arctic. Is it the ancestors of present day Inuit, or was it Native Americans or was it somebody else? So I went to the National Museum in Denmark and asked, do you have any human remains from these very early Arctic people? And they said, well, there only exist two tiny fragments of bones and you’re not getting them.

[00:17:41] Robot: Rejected.

[00:17:42] Dr. Eske Willerslev: Well, isn’t there something else? They said, no, it’s one of the mysteries. They left nothing behind. And then I thought, okay, I’ll do something else. If I could get animal bones that these guys have been handling with their hands, right? Like splitting the bones or whatever. They might have put the DNA traces on the bones, right? By basically handling the bones.

So I went to Peary Land, which is the most Northern part of Greenland. I mean, next stop is the North Pole, right? It’s a, it’s a stone desert, basically. It’s because you can see the archeological sites from these Paleo-Inuit, so I could go in there and take the bones, right? And I brought them back, I extracted the DNA from them and I got, you know, uh, polar bear and muskox and whatever, I didn’t get any human, so it didn’t work. And then I kind of gave it up. And then I was sitting with my new director of the Natural History Museum and he said to me, listen, that’s funny because my father was the one who archeologically discovered these early people in the Arctic and I’m pretty sure they found this piece of hair. And I said, well, no, because I’ve been in the National Museum and they said they don’t have anything. And he said, I’m totally sure. So he called and it was like, oh my God. Yes, we have the hair. Uh, we forgot about that. And I was like, I just went, you know, to Peary Land for one and a half month, right. With polar bears and muskox and, and this bloody piece of hair was lying 10 minutes by bike from where I’m living. It’s like…?!

We got the hair and that’s what we used to create this first genome. And we could show that already then that these Paleo-Inuit, uh, these very early Peoples were not, uh, the direct ancestors of, uh, contemporary Inuit. They were also not Native Americans, they’re basically, uh, you can say a separate, unknown, previous unknown group of People who went from Siberia into the Americas and further on into to Greenland.

[00:19:57] Dr. Shawn Hercules: Eske had graduated from eDNA to aDNA or Ancient DNA, but for him, the discovery he made was going to open up something about himself, he hadn’t expected.

[00:20:12] Dr. Eske Willerslev: We are immigrants, all of us. So we are one big network basically.

[00:20:19] Dr. Kaylee Byers: And we’ll get into that in a hot minute. But first,

You’re listening to ‘Nice Genes!’, a podcast all about the fascinating world of genomics and the evolving science behind it. Brought to you by Genome British Columbia. I’m Dr. Kaylee Byers, your host, and I have a quick favor to ask you. If you’re liking the show, hit ‘follow’ on Apple Podcasts or wherever you get your shows and you can help to continue this genomic revolution by telling your friends about the show. And, as an added bonus, it gives you some new content for the group chat.

[00:20:59] Anish: All right. The results are in.

[00:21:01] Dr. Shawn Hercules: We’re back with Anish who has just received her DNA test results.

[00:21:06] Anish: Nervous for surprises I think. Your DNA suggests, Central Asian, Northern Indian, and Pakistani. Wow. Okay. There’s a picture of mangoes. Yeah. It’s Northern regions of India and a very heavy part of Pakistan. I had my mind set that, it was going to show 100% Indian and I am surprised to see that it is Pakistan. Hey, like the mix of two, really just kind of makes me wonder where the rest of my family is.

[00:21:43] Dr. Shawn Hercules: Before she received her results, we shared some of the thoughts we had regarding DNA tests, and the perceptions people may have around them.

[00:21:53] Anish: I don’t know. I just feel like it’s — the borders and like the constructs of like race and identi-, like nationalities, have added a barrier in like people really figuring out who they are rather than being like, okay, we’re more similar to one another. So that’s how I feel.

[00:22:13] Dr. Kaylee Byers: Despite that, after poking around her results a little more, there are a few details that perhaps are of interest to her.

[00:22:22] Anish: So the report has the health component to it as well. So I’m just going to click on that and let’s see. Health predispositions, late onset of Alzheimer’s disease, slightly increased risk type 2 diabetes. Increase likelihood, it’s, uh, 70%. They even imply that this is not a, uh, a health report. So I just — to not take it personally, but it’s just because there’s 7 out of 10 chances that I may get diabetes. And, and I know that my mom has type 2 diabetes, but I also do question to what extent have they kind of correlated that data based on what I gave them. And then, coming back and saying that 70% of South Asians will develop type 2 diabetes from the ages of 24 to 80. So I’m just wondering to what extent like, is my data correlated to the generalization of the population

[00:23:35] Dr. Kaylee Byers: From what we heard, Anish’s DNA results revealed some medical health risks from both, what was read in her genome, and her ancestry. I wanna get into that link between health and our ancestry, but also what we need to be mindful of when it comes to interpreting this kind of information. Okay, Shawn. Let’s throw to you first. So this isn’t far from what your research has been focused on. Starting with a study, you began in your PhD where you looked at acute risks of breast cancer in a population of women in Barbados, in the Caribbean.

[00:24:11] Dr. Shawn Hercules: Yeah. I started my PhD in 2015 under the supervision of Dr. Juliet Daniel and we were really interested in an aggressive subtype of breast cancer called triple negative breast cancer. And preliminary evidence suggests that this form of breast cancer disproportionately affects women of African ancestry. So I hopped on a plane, I traveled to Barbados and I collected triple negative breast cancer tissue samples. So then I flew back to Canada and I took these samples and I extracted DNA from these tumor samples.

We essentially investigated, uh, the mutational profile within these samples because there is such a lack of representation of genomics data, specifically, ancestries that are not European. So we also know that across West Africa, um, there is this high incidence of, of triple negative breast cancer, and there is a high shared ancestry between that of West Africa and the Caribbean, in Barbados specifically. We also traveled to Nigeria, collected samples and we compared, uh, their mutational profiles to see if there are any, any common mutations between, uh, these, these two groups and then compare that, uh, to other populations within, uh, large genomics databases.

So essentially we found that for most of the genes that were highlighted within our Barbadian and Nigerian cohorts, these were not highlighted within The Cancer Genome Atlas, which has, um, a high percentage of, of European ancestry. So this was quite interesting to us because a lot of the genes that researchers are investigating and following up on, you know, are not really representative and true of all populations.

[00:26:15] Dr. Kaylee Byers: Over to you, Janina. I mean, as Shawn was mentioning, there is this scarcity of representative genomic data. And a lot of the data we have is really heavily biased towards European ancestry. Something that comes up in your podcast as: ‘Genetics? So white’. So, what are the implications of this? Both for people and for science?

[00:26:36] Dr. Janina Jeff: We can talk about this for two hours, if you want. So there’s a little bit of bias in who researchers are and who their communities are and who they have access to samples in terms of like, how did this all start? The second part is that, there is a lack of representation in genetics and genomics research because #ScienceIsSoRacist, right? Um, if we think about most people of colour and, especially in the Americas and their engagement with the medical system, it’s not a great one. That history is, it’s not something that I would say new generations are like, yeah, let me, let me go participate in this study. So it creates a whole bunch of issues. The biggest issue that I would say I’m the closest to, is this lack of being able to transfer, uh, or translate the results from all of these studies that were done to other populations. Right now, there’s a huge push to take all of the genetics that we’re understanding in populations from all of these companies and also academic institutions and incorporate that into the medical system and report results back to patients on their genetic health risk. You know, these genetic health risks are extremely biased, they may not be representative for every single population. Um, essentially, here’s what we know right now — we actually don’t know a lot about populations that are underrepresented and if you’re not a person of European descent, more than likely that that’s you. So, I think that is some of the consequences I should say, we’re dealing with, due to how this problem originated.

Um, another issue you have is misclassification of variants. And so a lot of times, um, scientists and labs will say, ‘hey, this variant is pathogenic’; meaning it, it causes disease and will report it, and then scientists will try to use that knowledge, that annotation in a clinical setting, and then realize that everyone who has ovarian actually doesn’t develop the disease. And that has some huge consequences and it’s happened, several times. And so we have the misclassification misdiagnosis of people, uh, based off of, you know, misguided discovery studies that are being used across all populations. But really the sad thing for me is that there are a host of diseases and phenotypes that impact populations that are not of European descent, that aren’t even being studied, that are not being funded, that we don’t know where in the genome they could be occurring, despite there being a higher case incidence in one population versus another. Good example of that is, uh, sickle cell research versus cystic fibrosis research where, sickle cell is way more common, way more kids are dying, but cystic fibrosis has much more funding, much more known.

[00:29:32] Dr. Kaylee Byers: And is cystic fibrosis more common among people of European ancestry?

[00:29:35] Dr. Janina Jeff: Yeah. So that’s, I mean, so the biggest difference is that yeah, majority of the patients, uh, for, uh, cystic fibrosis are European descent and majority of the patients — not all — a lot of people like to think, all African descendants have sickle cell. No, but majority of the patients are of non-European descent.

[00:29:53] Dr. Shawn Hercules: Yeah, so Janina, there’s something I’ve been noticing that researchers are doing across North America and beyond, trying to address this lack of genomics data of various populations.

[00:30:05] Dr. Janina Jeff: Yeah.

[00:30:06] Dr. Shawn Hercules: So some researchers enter these communities, get some DNA, and just leave.

[00:30:11] Dr. Janina Jeff: Yes.

[00:30:12] Dr. Shawn Hercules: Um, not leaving very much in exchange. What do you think is the right approach to working with marginalized communities as researchers, while respecting, um, their genetic information?

[00:30:24] Dr. Janina Jeff: That is an excellent question. Um, some people call it ‘helicopter research’, where scientists fly into a population, collect data, give everybody $20 and then leave or t-shirts or, I don’t know, vaccines. I don’t, you know, basic things that all humans should have, you know? The biggest problem I have is that most populations don’t realize what they’re giving. Don’t realize the impact, the value of giving their data. And I’ll speak to this more, um, outside of the Americas and more rural communities, um, in different countries where, you know, scientists come in and there might be a community that’s dealing with a disease that is just, you know, that has been there for hundreds of years. Um, scientists may not even know about that disease, but they wanna come in and collect DNA and say, Hey, you know, we’re doing research and we’re doing something that’s gonna help, you know, this population live a better life, but they’re not given actually anything that actually helps them. So the, the reason why I bring that up is because really there’s a lack of transparency; it’s just in the communication of what we’re doing, that people don’t realize that, okay, I’m donating, I’m, I’m contributing to science. What am I contributing? What is the magnitude of what I’m contributing? In some cases contributing your DNA could lead to the development of a billion dollar drug that you can’t even afford, but every community has different needs. And so, I tell people, until we figure out a way where every patient is getting the same value that the scientist at the pharma company, that the person doing the research is getting, then it’s not equitable.

They have to be sitting at the table, helping you design these science questions, help you understand what are the needs of this community and how can everybody win.

[00:32:19] Dr. Kaylee Byers: And this is where we’ve come into a really important consideration for the field of human genomics. To better understand and address issues of health. We really need to be including everyone. But when you’re looking to increase representation among excluded groups of people, how do you enter those settings without perpetuating exploitation under the banner of scientific research?

[00:32:44] Dr. Eske Willerslev: Yeah, yeah, yeah, yeah.

[00:32:45] Dr. Shawn Hercules: Dr. Eske Willerslev had his own moment of reckoning with this reality. And it’s one, he’s still facing the consequences of today.

[00:32:55] Dr. Eske Willerslev: I got quite unpopular to say it at least, among, uh, some archeologists and physical anthropologists because, uh, I had a Skype meeting with one of these guys, actually, not that long ago and I remember the first thing he said to me, when we went online, he said, we don’t like you. And I asked, well, who don’t like me? Everybody, he said. So.

[00:33:20] Dr. Kaylee Byers: His unpopularity stemmed from an ancient DNA case he worked on back in the nineties.

[00:33:25] Dr. Eske Willerslev: Yeah. I mean, we, we, at that time started the work on what is known as the Kennewick Man or as the Native Americans called him, the Ancient One.

[00:33:35] Dr. Kaylee Byers: Remains of the Ancient One were discovered in Washington State in the US, and led to a huge debate.

[00:33:41] Dr. Eske Willerslev: This skeleton of an adult male dated to around 9,000 years, was the subject of a court case.

[00:33:51] Speaker: Order in the court.

[00:33:52] Dr. Eske Willerslev: The scientists on one hand, archeologists, uh, physical anthropologists and then Native American tribes and the US government on the other side. The first, you can say, physical anthropologists who looked at it measured, you know, the skull and kind of said, well, it has these Caucasian features, which basically implies, you know, it’s a European and it’s 9,000 years old, so you can imagine it kind of raised this whole debate of who are the first people in the Americas. This is way before Vikings, it’s way before Columbus, it’s way before anything, right?

Uh, the Five Tribes from this area basically said, ‘It’s our ancestor and we want him repatriated so we can rebury him’. The US government and the Corps of Engineers, they said, well, we want to give it back. And then the scientists sued the US government based on the argument, this is not a Native American.

It became this simple of a fight of who owned the past. Is it the scientists or is it the Native People? The judge, he said, well, he favored the scientists and said, well, this skeleton will not be repatriated, but should be investigated because it’s, it’s not an Native American.

The Corps of Engineers asked me to try to retrieve DNA from a piece where they had tried previously to retrieve DNA, but failed. So it was a small hand bone, but it was under the condition that everything should be kept very secret. Failure in the process where we could see, well, it kind of looks like something Native American alike. Right. And I remember a journalist, so she got access to it and wrote a paper and, uh, the, the Tribes kind of, you know, read this and, uh, went to the Corps of Engineers and kind of said, what’s going? This Dane is sitting doing DNA on, on these remains. And what does it show? And then the General or whatever it was, I was told, said kind of, uh, um, well, it shows it’s a human and then, then they got even more upset, right? Because it’s kind of, I mean, of course it’s a human, right. Even, you know, everybody can see it’s a human. And, uh, I was kind of in the problem that I was not allowed really allowed right, to, to, uh, speak well, I basically broke that agreement. So I flew in, I met up with representatives of the Five Tribes and at that point we actually had some very clear results.

So I could report and say, listen, this is, uh, it is a Native American, from a genetic standpoint, the Kennewick Man or the Ancient One is closer related to Native Americans than to any other Peoples we can compare to. It ended by, President Obama made some kind of registration based on the results that basically gave the skeleton back to, um, back to the Tribes and it got, uh, repatriated and reburied. Well, that’s how the story ended.

[00:37:16] Dr. Shawn Hercules: So as we move to close out, I’m curious Janina, what critical lens do you think individuals and researchers should take when it comes to understanding science and race?

[00:37:27] Dr. Janina Jeff: Well, I’m trying to still understand this myself and I should say that learning a bunch of this stuff was, very new to me. Um, so I would say, you know, the biggest thing is understanding how a lot of science has a lot of racist, undertones and, and pinnings and beginnings.

And. Um, I don’t say that to, to say that science isn’t good. I mean, I’m a science nerd, science is amazing and, and actually science is one of the reasons why we know that science is so racist. So trying to, trying to separate the two is what I like am pushing for the most. I do think that the more we start to educate ourselves on how race became a science or a pseudoscience, the more we can understand its impact.

So the biggest thing I think we need to do is take a critical lens at the language that we use. So oftentimes we are using language that we don’t even realize has racist underpinnings, or any type of social, uh, implications. And so I think, as we know, for example, race is not real. Uh, and race is not a scientific or genetics term, we shouldn’t be using race when talking about genetics. So one of the things I like to do a lot is make sure when I’m using language and I’m talking about genetic ancestry, I’m talking about it using the words that we use to describe genetic ancestry, which is ancestors, descendants countries, versus some of the things that people use to ascribe as race, which is really like ethnicity.

Um, the same is true for gender. The same is true for, you know, how we describe medical conditions, interwoven with fat phobia and sexism and ageism and ableism. So as we start to take out these terms that are really supporting the social constructs from science, then we can start to separate the social constructs from science.

[00:39:34] Dr. Kaylee Byers: Is there anything else in the work you do, uh, as a scientist and a community member and podcaster that we didn’t ask you? That you would like to discuss?

[00:39:43] Dr. Janina Jeff: I talk all the time about my love for the arts. I think I grew up keeping my love for the arts very separate from my love for science, almost like it was shamed upon to like cool things if you were a scientist. Funny, funny thing happened. I went to, I gave a talk recently at the University of Chicago and, um, you know, I don’t feel like the students really half of them didn’t come to the talk. And then the ones that did come to the talk, they weren’t very engaged, but once we went to dinner and I started telling them like some of my favorite hip hop artists, it was like, we left the dinner with students like ‘you changed my life’. Like, ‘I didn’t know, like I could incorporate hip hop in some part of science’. So whenever I talk about science, to up and coming scientists. I like to not use the word STEM and I like to use the word STEAM and STEAM is adding that ‘A’ in there for the Arts, because I think when we think about the Arts, all scientists are artists too.

We have to be creative. And I just hope that we appreciate that more and really break down kind of like, these things of what a scientist is supposed to be, and really like open it and say, a scientist? Everyone is a scientist.

[00:40:53] Dr. Kaylee Byers: Thank you so much for joining us today. It has truly been an absolute pleasure.

[00:40:57] Dr. Janina Jeff: Oh, thank you guys so much. This has been great.

[00:41:13] Dr. Kaylee Byers: So Shawn, I actually, uh, have a bit of a final question for you. Wow.

[00:41:30] Dr. Shawn Hercules: Sorry.

[00:41:31] Dr. Kaylee Byers: So after hearing what we chatted about today with Janina, is there anything that you think you’d take with you in your work moving forward?

[00:41:39] Dr. Shawn Hercules: I mean, the biggest takeaway is that we should be mindful about why we are doing what we are doing. Um, we need to think about, how this science is going to be interpreted. And we also need to, to think about how we can actually do our science in, in a, in an ethical way, a way that doesn’t make science look like the bad guy in a lot of ways, science looks like the bad guy. Yeah. And another thing that, that Janina talked about being able to bridge these science and art components, which is something I’d really identify with. And I love that connection of art and science.

[00:42:20] Dr. Kaylee Byers: Amazing. So with that, Shawn, why don’t you close us out for today?

[00:42:26] Dr. Shawn Hercules: Oh, great. Of course. Um, you’ve been listening to ‘Nice Genes!’, a podcast brought to you by Genome British Columbia. If you like this episode, go check out some of the previous ones and also follow the show to catch new ones coming up. You can also DM the show on Twitter by going to @GenomeBC.

[00:42:48] Dr. Kaylee Byers: And I just wanted to add that the education team at Genome BC have put together some ‘Learn-A-Longs’, so you can dive into all the fun topics we cover and explore the world of genomics for yourself. You can find them in our show notes, not just for this episode, but all our episodes.

Thank you so much for being with us today, Dr. Shawn Hercules.

[00:43:08] Dr. Shawn Hercules: Thanks for inviting me, I had so much fun.

[00:43:15] Dr. Kaylee Byers: Join us next time, where we take a marvelous look at mutations in our genome.

[00:43:22] Dr. Brian Arnold: So, you know, we can speak of mutations arising that allow organisms to adapt to an environment, but bacteria are able to get wholesale, entire genes or sets of genes and genetic pathways and quickly evolve.

[00:43:36] Dr. Kaylee Byers: Is it sort of like Rogue who can reach into other superheroes and grab their powers only in this case, Rogue is also then taking that and putting it into her genome?

[00:43:45] Dr. Brian Arnold: That’s a fascinating analogy. Yes, it is absolutely like that. And I, I wish I wish we had that super power.

[00:43:54] Dr. Kaylee Byers: Follow us on Apple Podcasts or wherever you get your shows until then, thanks for listening!

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