The practice of biotech companies going into under-represented communities to study people’s genetic makeup is not new. Neither, unfortunately, is the practice of those same companies taking advantage of those who share their DNA or other genetic material. That includes at least one Native American community in Arizona.
A Seattle-based company, though, is looking to do things differently. Variant Bio recently announced a multimillion-dollar deal with a pharmaceutical company. The New York Times reports some of that money will go to the Indigenous communities with whom the firm worked across nine countries or territories.
Krystal Tsosie, an assistant professor in ASU’s School of Life Sciences, joined The Show to talk about what this could mean going forward, starting with what she thinks about the Variant Bio model, especially relative to what we’ve seen other companies do in the past.
Full conversation
KRYSTAL TSOSIE: To be honest, the news that Variant Bio is offering some sort of profit sharing with the scientific communities that they're partnering as a form of benefit sharing is not new to Variant Bio. It's been part of their mission statement for the last few years, but the novelty is that they're really among the first pharmaceutical companies to have this type of this language in their mission statements. But also, it's surprising that no other drug companies, to my knowledge, have also similarly followed suit.
MARK BRODIE: Why do you think it is that more companies haven't done that?
TSOSIE: Oh, cash, money. If you have people who are willing to pay $100 or more to companies and they spit in the tube, mail it off and get some sort of results out of that, if they're getting like double the money, like in terms of what people are willing to pay for the service, and then they're willing to also sell that data to other companies, why would they, try to do the right thing? Why would they try to exercise some sort of corporate accountability in that regard.
There's also the problem that in this era of open data, everyone is being encouraged to share all of their data, but nobody's questioning that industry really stands to profit in like a one-way dynamic that is not seen in other spaces.
BRODIE: So is there any way other than just individual companies deciding to do it differently to encourage more of what Variant Bio is doing in this space? Like, is there, are there policy changes? Are there financial structural industry changes that could or maybe in your mind need to happen?
TSOSIE: Oh, there needs to be a lot of structural and systemic changes. First of all, it's great that there's this positive news that's coming forward, and people really responding to the very bio model. And I hope that that will see like other positive shifts in other companies and other spaces.
The other thing is that we as researchers and people who utilize and collect data should also start taking these systems as part of our normative practices. It needs to be the new norm. And then consumers, individuals who are producers of this data should be more critically asking the question, what are those terms to which I am agreeing to when I just click through like the end user license agreements, that I'm signing to unwittingly and not reading the, the thing, we really should be questioning more about the power of our consent and also understanding the commercial value of our, particularly our genetic data.
BRODIE: Yeah, I wanted to ask about the role that sort of awareness plays in all of this. It sounds like it's a pretty big component, especially on sort of the user, the producer of the data end of this.
TSOSIE: So, when I teach this in my class of undergraduate students, I first start off with an example. Think about the popular social media app that you've downloaded and you have to click on the end user license agreement, the ULA, like are you actually You're reading the terms, or are you just scrolling through it and clicking next? And you, you might be OK with your data being sold to advertisers or having cookies tracking your clicks on, on your personal device.
But then think about your DNA and like what we're giving up in terms of the type of knowledge and surveillance that not only companies but also perhaps governments are able to unlock this power of tracking not only all of our activities as individuals, but also tracking then also so, like the choices and the health statuses of everyone that we're biologically related to.
BRODIE: Do you see any evidence to suggest that what Variant Bio is doing is, is a model that is being or will soon be adopted by other companies? Like, is what they're doing causing some kind of sea change within the industry?
TSOSIE: Oh, I don't have that type of oversight over across the industries, but I do know that this has garnered a lot of positive attention in the academic biomedical spaces, and a lot of universities are also partnered intrinsically hand in hand with corporations and industries, particularly in the space of genomics research.
So again, by really pushing this as the new model, the new norm, hoping that this will come to some pivotal fundamental changes later on.
BRODIE: Assuming that there are other companies that either in the near term or a little bit maybe further down the road, start doing what Variant Bio is doing, what does that mean, how does that impact the people who are offering up there or or giving their their genetic data, like especially in underrepresented communities and maybe some underserved communities, like what, what might that do for them?
TSOSIE: So let us be clear that a large amount of interest in finding novel gene variants are going to be in underrepresented communities that haven't participated in genomics research in large amounts, and also it's going to be in rare variant communities and patient advocacy groups and there have been over the past years, a number of these communities already asserting some grassroots power on collectivizing their patients and their families' data together.
And this is really just, requires a series of understanding that the power of discovery and actually the power of defining benefits is actually within them. And once that shift starts, I think you'll start to see a power dynamic that emerges in other spaces.
BRODIE: Are you seeing more of that happening? Where groups of people are saying, OK, we'll do this, but here's what we need to get in return. Here's some of the things that you need to do for us.
TSOSIE: I am glad that you asked that question. There are global communities, indigenous communities within the U.S. and outside the U.S. that are really questioning, OK, what is the value of the sequence information that you're asking from us? And, you know, DNA is a commodified form of data, and there's a lot of promises about gene editing and CRISPR and also reintroducing biodiversity into monocultured species that really govern big industry and big agriculture.
And some of this is from stewarded species from indigenous peoples, and yes, ourselves as our bodies also serving as this question of the global diversity contributing to population gene variation. So really becoming more savvy to the fact that the power lies within smaller communities to assert to you for tribal nations in the U.S. to utilize their sovereignty to create databases and also help research institutions to drive these types of collective efforts have been gaining foot over the last few years.
