Ellen Jorgensen On Biotech’s Potential and the Complexities of Regulation

Season 2 Episode 9
Ellen Jorgensen on Biotech’s Potential and the Complexities of Regulation

S2E9 / August 13, 2020

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Biotechnology — the use of biological processes for industrial and other purposes, especially through genetic manipulation of micro-organisms — is a field experiencing massive growth worldwide. For many decades, advances in biology have been made in large academic or corporate institutions, with entry to the field restricted by knowledge and financial barriers. Now, through information sharing and new means of accessing lab space and equipment, a whole new community of amateur scientists are entering the molecular biology space. The emergence of this growing do-it-yourself “biohacker” community raises ethical questions of what work should be allowed to proceed.

In this episode of Big Tech, co-hosts David Skok and Taylor Owen speak with Ellen Jorgensen, a molecular biologist and Chief Scientific Officer at Aanika Biosciences. She is an advocate for democratizing biotechnology by enabling more individuals to have access to lab space and equipment.  

Jurisdictions are taking different approaches to biotechnology, with some, such as the European Union and Africa, being more restrictive than others, such as China. What makes the fragmentation of governance surrounding genetic modification different from fragmentation in internet or tech governance is that biotechnology’s raw material is a global interconnected web of life. A biological modification can have unintended, even disastrous, impacts worldwide. For example, says Jorgensen, “What I’m concerned with is things like gene drives, which is a variety of CRISPR gene editing that's self-perpetuating.…So, 100 percent of the offspring, where one of the parents has this gene drive, all have the gene drive. So, it can spread through a population, particularly one with a short lifespan, like mosquitoes, within a very short period of time. And here, for the first time, we have the ability to potentially wipe out a species.”

As Jorgensen points out, with such high stakes, we have an “inherent motivation to regulate.” Working together on a global set of standards, and setting aside their own ethical or moral understandings to find a solution that works for everyone, will present a challenge for nations.


This transcript was completed with the aid of computer voice recognition software. If you notice an error in this transcript, please let us know by contacting us here.


David Skok: Hello, I'm David Skok, the Editor-in-Chief of The Logic.

Taylor Owen: And I'm Taylor Owen, senior fellow at the Center for International Governance Innovation, and a Professor of Public Policy at McGill.

David Skok: And this is Big Tech, a podcast that explores a world reliant on tech, those creating it, and those trying to govern it.


Taylor Owen: When we interviewed Dr. Ellen Jorgensen back in February, the conversation mainly revolved around the gene editing technique, CRISPR and the world of do it yourself biohacking. But fast forward seven months, and the conversation in the space has changed dramatically. Like everything else, the coronavirus has appended the world of biotech.

David Skok: Dr. Jorgensen is the Chief Scientific Officer at Aanika Biosciences, a biotech company that's trying to digitize the natural world. Which means doing things like embedding programmable molecules into our food, biological barcodes that can tell us where a head of lettuce came from. In the midst of the pandemics she shifted her focus, she's now leading research on a new COVID-19 test that can be done in a cup of hot water, eliminating the need for PCR testing machines, hard to come by in some parts of the world.

Taylor Owen: So why are we having a molecular biologist on a podcast about technology? Well, David and I see similarities between the biotech being developed today and the tech being developed in Silicon Valley a decade ago. Just like with the digital technology that was coming out in the early 2000s biotechnology is evolving rapidly and without much input from the broader public or from government regulators. The algorithms developed in Silicon Valley had serious unintended consequences, could the same be true for CRISPR and other forms of biotechnology?

David Skok: We sat down with Dr. Jorgensen back in February to see if she shares these concerns.


David Skok: Dr. Jorgensen, welcome to Big Tech.

Ellen Jorgensen: Thank you too.

David Skok: So, you're a molecular biologist and we're hosting a podcast about the way technology intersects with society. We see a parallel between the work that we do and the work that you do. Do you see a similar parallel?

Ellen Jorgensen: Well, the past 10 years of my life, I've been involved in a movement to democratize biotech. And part of the reason that I was attracted to it was the idea that this technology was moving very quickly and it was moving more quickly than regulators normally move. And the general public didn't seem to be informed of that and so a greater engagement with this type of tech has been something that I've been involved in now for the past 10 years.

Taylor Owen: What about biotech deviates from just traditional biology? What makes it technology to you?

Ellen Jorgensen: Well, I think the thing that differentiates biotech from all of the other tech revolutions is it's so damn personal. So if you can imagine somebody getting upset because a computer hacker stole money from them, that's terrible, but what if somebody got a disease or their health was affected, that's your life, so I think that's what runs through people's minds. This is my life, this is my health, this is personal.

David Skok: So, I'm sure you've answered this question a hundred times, but just stepping back and for those of us who aren't too familiar with this world, what exactly is biohacking?

Ellen Jorgensen: That is a definition that is self-imposed, so it means different things to different people. The way we think of it is biotechnology done in an unconventional space by people who aren't normally engaging in it. So we're doing things that are similar, but at a vastly lower level, for the most part to what people are doing in biotech companies in universities. But we're doing the same thing, we're genetically modifying organisms that have been worked with since the 1970s that are safe, like certain educational strains of E coli that are used in high school classrooms on a regular basis. Now there's another branch of biohacking where people are trying to actually hack themselves. So I'm not involved in that branch, I know a little bit about it. There's been a collision between these two branches recently with a few high profile people that have gotten into the news. And unfortunately they become the face of the movement because what they're doing is very inflammatory. So people who think that they can short circuit the system of drugs and medicines in the United States, by treating themselves with biotech products, that's one area I think is extremely dangerous.

Taylor Owen: In your community of biohackers, how are the activities democratizing? What are they democratizing? The industry or traditional science, or the university process, or what is it that's being decentralized?

Ellen Jorgensen: So, if I want to do an experiment in a lab, there is literally no place for me to go, unless I am an employee of a biotech company, or I'm enrolled in a university. There's no such thing as lab space for hire, or just a place that is open to the public for people who potentially can't afford to go into a traditional biotech incubator space, which is very competitive and will cost you a thousand dollars a month. And some of the most interesting experiments I've seen have been a collaboration between someone who doesn't know science, but has a really interesting idea and then a friend of theirs who is a practicing scientist. And between the two of them, they'll start a company and there's no space for that sort of stuff in the society, when we started Genspace had no idea who was going to use the space. We just had this real intuition that it would be something that would be useful. And so the people that use the space are everyone from bio artists who want to engage in biotech for their artistic practice, to teachers who want to stage some of their lessons and try things out in our space before they spend a lot of money on a kit for their classroom, and then the general public there's this curiosity about it. And I like to encourage that because I think a lot of the anti-genetic engineering sentiment is due to people not completely understanding what genetic engineering is and how it's really touched almost every aspect of our lives at this point.

David Skok: I think Silicon Valley was largely born out of that same, do it yourself, ethos. However, as we've now seen it, hasn't exactly prevented a concentration of power. So stretching this forward, do you think this could be different for biotech, or would we ultimately lead down the same couple of companies that control the market?

Ellen Jorgensen: Well, there's a lot of differences, everyone loves that Silicon Valley analogy, and actually the people who started the DIY bio movement capitalized on that heavily. They would say, well, look what these guys in a garage did, but there are a couple of major differences. First of all, biology is not a new field, there are literally hundreds of years of research. Number two, computers we built from the ground up, so in a sense we own everything, right? Biology is, a lot of it is discovered so there's some democratization in that anyone can discover something if they're lucky enough. And yes, if you have a lot of resources, there's more of a chance that you might discover something, but we still do see amazing things coming out of grassroots biology. So I think that there's a fundamental difference that makes it a little less prone to that sort of concentration of power. Nature is everywhere, DNA is everywhere, DNA is available to anyone.

Taylor Owen: It feels like, at least in the public discourse, that over the past decade, there really has been a change in the technological capacity to engage with that DNA, though. Right. And I'm wondering if can you talk a little bit about that and about how gene editing has come into play in this conversation and how much that's changed your work and the discussion of this kind of work.

Ellen Jorgensen: I want to be a little careful here because there's all of this hysteria about how CRISPR, which is one of the main gene editing systems, is so simple that anyone can use it. That's a bit of a myth. There are iterations of CRISPR that are easy to use, but they really are available at a level where you're working with a laboratory organism, like a strain of bacteria or strain of yeast. Then there are uses that are really more inflammatory, like the idea of designer babies. And that's something that, it makes me laugh because if you're talking about engineering and embryo, you have to have a facility where you can handle embryos and implant them. Is anyone worried that people are doing that sort of thing in a garage? The likelihood of them succeeding in any way, we still don't know all that we need to know about the simplest bacteria in order to accurately predict how to change its behaviour. Usually nothing happens. So I think that the ramp up is a lot steeper for biotech than it is for just learning to solder something together.

David Skok: I guess I'm perhaps a bit more cynical of the world. And it's not necessarily to me the scientific community itself that could use these tools for harm it's others, right? I mean, it could be a terrorist for all you know. And so I guess there's an assumption that's embedded or it seems to be an assumption, embedded in this conversation that there are no people out there, but unethical ambitions who can't learn this and use it for sinister means, is that an unfair statement?

Ellen Jorgensen: There will always be bad actors. That's human nature. You're not going to eliminate bad actors. So whether the stuff is democratized or not, the bad actors are going to find their way to this technology. But you can't suppress this sort of tech, actually, most of the things that are classified as bio-terror like the anthrax stuff, they came from labs, from professional people. They didn't come from the amateur community.

David Skok: We focused obviously a lot on the United States approach, and I'm curious from a global perspective, how different jurisdictions are managing this, the ethical and regulatory challenges that come with this technology?

Ellen Jorgensen: Europe is a particularly interesting example because they have been very restrictive about GMOs in food, and they recently expanded the definition of GMO. So the original definition was taking DNA that was foreign to that organism and placing it within that organism. So taking DNA from a jellyfish and putting it into a rabbit or something like that. Now the definition has been expanded to include any change that's made through the techniques of genetic engineering. And one of the reasons this came about was the genome editing system, CRISPR, because it's possible to use that system and have the components of the system completely disintegrated and be destroyed and not in the cell anymore.

Taylor Owen: Can you explain what you mean by that?

Ellen Jorgensen: This is going to end up a biology lesson, which is probably going to be boring. But if you put DNA into a cell, there's the likelihood that it might incorporate somewhere or not go away. There's always a fear that you'll get a rare event where something will happen that shouldn't happen. So we figured out how to put the machinery of CRISPR into a cell without using DNA. And so you stick it inside the cell, it does its thing and then it gets chewed up and disintegrates and it's gone, but the edit remains. And the edit could be a deletion, it could be not putting new DNA in. It could be taking stuff out. As a matter of fact, a lot of interesting characteristics in agriculture can be achieved by deleting a gene like those apples that don't brown when you slice them. So is that a genetically modified organism if it's just missing a piece of DNA? Well, the EU says, yes. So their definition is very stringent on food. However, they are gung ho on genetic engineering for other things. So it's a very weird, almost schizophrenic attitude towards genetic engineering. And you see that in a lot of different countries, they want the industrial technology. They want it to make new materials, new enzymes. They want to take the genes for important medical compounds or flavours and fragrances that are in plants that are being harvested to extinction and put them into yeast and brew them up in a vat. And yet, sometimes the laws are very restrictive because when people think genetic engineering, they think food. This is particularly a problem in certain countries in Africa, where there's been such a scare around GMO food, that the scientists that work in those countries that are trying to develop varieties of say banana, that resist banana blight are being locked out, even though it could save thousands of lives, because this is a food crop, a really important food crop.

David Skok: When I hear you talk, I mean, it's so easy for me to get excited about what you're talking about and get into the weeds of it on an incremental basis of, oh my goodness, that sounds fantastic. And then I zoom out and the other side of my shoulder is saying, wait a minute. Where does this end? And so I just wonder how, there's this saying of are you on the dance floor, or are you in the balcony? How you and your community, and more generally balances that, that constant sense of, okay, I'm now on the dance floor splitting a gene, but now I've got to get up in the balcony and assess the wider implications of what I'm doing and whether I'm causing greater harm or benefit to the world. How do you balance those things?

Ellen Jorgensen: Drew Endy at Stanford calls it the half pipe of doom, we're going to kill the world, we're going to save the world. We're going to kill the world, we're going to save the world. And swinging back and forth between those extremes isn't terribly helpful, but I think it always keeps, to use your image, the different, the angel and the devil is sitting on your shoulder. You're always thinking about the consequences of your work. I think that scientists often get a bad rap that we're the image of Dr. Frankenstein railing at the world, that they don't understand him, and he's going to do these amazing things, not really thinking about how the world wants to engage with those amazing things. I think most scientists are well aware of this, and it can get frustrating at times because if you feel you have something that's really going to help the world, and you feel that there are challenges from an ethical point of view that you don't think are particularly valid, but other people do, who makes the decision in the end? And to me, that's the crux of the whole thing, is who has the power to make the decision and how does it get made?

Taylor Owen: Part of that frustration must be how certain news stories around this have dominated public attention. And you always need public buy-in to, science needs public buy-in generally. But I wonder to what degree, the stories of the Chinese government's use of these technologies, and you mentioned the designer baby conversation, but it feels like that was a real concern with a government that was making a different set of decisions around this. Then maybe we would in the United States or Europe.


Kathy Young: A Chinese researcher claim they've helped make the world’s first gene edited babies. Twin girls, whose DNA he says he altered with a powerful new tool that lets scientists edit the genetic code.

SOURCE: Associated Press YouTube Channel


First gene-edited babies reported in China

November 25, 2018

Taylor Owen: How do you look at that story and how it affected this narrative?

Ellen Jorgensen: Well, they never really admitted that this was something that they condoned. The scientist is now in jail. They've told the world that they didn't know what this guy was doing, that they didn't condone it. I think it's interesting that they waited until he unveiled it at a major international conference and waited until they saw how the world reacted before they jumped in and said, this guy's a maverick.

Taylor Owen: How do you interpret that?

Ellen Jorgensen: I think they did know what was going on. I think, well, it's obvious that there's more opportunity to do research that skirts on the edge of Western ethics in China, that's in controvertible. For pete's sake, there's an article in The Times, it was a guy doing head transplants. On the other hand, who are we with our Western morality to say that it's not good to make a designer baby, in a way that's imposing our idea of spirituality on a culture that may not feel the same way. Their attitude seems to be that whatever is best for the health of their population is on the table. And although the specific thing that this particular scientist did was deemed unethical by everyone for several reasons, the practice itself was not condemned. The things that were condemned were first of all, it was a vulnerable population. Apparently, the couple were of a lower socioeconomic class and probably uneducated and may not have completely understood what he was proposing to do to their babies. Number two, the edit that he made was prophylactic, it wasn't curative. It wasn't the same as getting rid of the sickle cell gene or something that you know is going to result in terrible suffering. And the third was that most people in the area feel that there isn't enough data yet on safety. And it takes a long time, it's been done on monkeys, but the monkeys are not old right now. This is such a new technology, it was just done in a test tube for the first time in 2012, five years later, we edited a human that's an insane ramp up. So that was a big concern as well.

Taylor Owen: That piece is remarkable. I mean, is that in and of itself, does that concern you that where we'll be in 10 years if that trajectory continues?

Ellen Jorgensen: Oh yeah. I mean that's why I like talking about it, to make everyone aware that it's happening this quickly. And granted part of it is something that's peculiar to the CRISPR technology itself. This is a major, major, discovery, and it has huge benefits. It's speeding up all sorts of biomedical research, for the first time we're looking literally at curing things. The first sickle cell patient has been treated, where they've taken her bone marrow cells and edited them to express fetal hemoglobin to make up for the lack of regular hemoglobin. And it's going really well. And now we're giving people this hope. So there are, any powerful technology it's always dual use. You can take a rock and hit someone on the head or you can build a house. So any technology has that dual use, it's just that the dual use can have bigger ramifications in this case.

Taylor Owen: I'm wondering where something like editing life or re-engineering life, we almost have a lowest common denominator problem there. Where, unless everybody's playing by the same rules, we will all head down a definitive path. You know what I mean? Like if China's playing by a totally different rules than we are, aren't we all in as part of humanity in that same boat?

Ellen Jorgensen: Yes, we are. I would agree with that. And that does concern me. On the other hand, we've been doing genetic engineering since the 1970s. It's just been slower than the pace that it is now. So this isn't really a big change in what we're doing, it's just an acceleration of how fast it's happening and how efficient we are. And the flip side is we know more than ever what the consequences of it are, because we now can measure virtually everything inside a cell and see how the cell is being disrupted. I think the thing that concerns me the most is that some of the genetic engineering is going to be released into the environment in the name of things like suppressing malaria. So there are several varieties of genetically modified mosquitoes that are in testing phase and have been trialed in places like Brazil and they can be extremely effective. What I’m concerned with is things like gene drives, which is a variety of CRISPR gene editing that’s self-perpetuating, think of it as a perpetual motion machine for genetic engineering. So once it's in a small percentage of the numbers in the species, it can spread and it completely ignores the laws of mendelian genetics. So, 100 percent of the offspring, where one of the parents has this gene drive, all have the gene drive. So, it can spread through a population, particularly one with a short lifespan, like mosquitoes, within a very short period of time. And here, for the first time, we have the ability to potentially wipe out a species. And so now you get debates as to whether or not we should eliminate the entire anopheles’ species that carries malaria, zika. And we've never really had that capability before in this type of way.

Taylor Owen: And we're not very good at having those kinds of conversations either.

Ellen Jorgensen: No, it's very terrible.

Taylor Owen: I mean, I'm not sure we're even capable of thinking that through, right?

Ellen Jorgensen: No. And the thing is, if you release these mosquitoes in one town, they're going to fly to the next town. I mean, it's not like they respect borders and regulations.

David Skok: I can't tell if I should be excited or terrified by our conversation.

Ellen Jorgensen: Well, that's the thing, is I think this sort of thing is equal parts of just exhilaration and terror, because you do have this vast capability.

Taylor Owen: In closing here and to bring this back to a bunch of other topics we've been talking about on the show, it's, we've been really concerned and looking into the way certain Silicon Valley technologies, were very quickly and rapidly evolved without a lot of thought of the long-term consequence, right? It was all seen as upside and we didn't put in place guardrails necessarily for some of these technologies and now we're starting to see that happen. And I'm wondering, are there some things that we just shouldn't be doing that you think, and what should those guardrails look like if we have the benefit of looking, what happened in broader technology spaces over the last decade?

Ellen Jorgensen: Well, again, I think the big difference here is that people have an inherent understanding of the risk of biotech that they didn’t have of information in silico. I think that there’s a much greater understanding and a distrust of this technology among the public, because it does hit home — and because we have seen biomedical things go wrong in the past.

Taylor Owen: So that creates an inherent limitation. You think on pace of change?

Ellen Jorgensen: I think that creates an inherent motivation to regulate. I just think that the thing that concerns me is if people don't know that it's there, their voice isn't going to be heard. So as I said to the credit of a lot of the people working on this, they are engaging in bioethics discussions all the time. And it's something that's really at the surface of their thoughts, it's not an afterthought. So that makes me feel good.

Taylor Owen: It's embedded in the practice.

Ellen Jorgensen: It is. As I said to the extent that it even is frustrating sometimes, but everyone understands that it's 100% necessary.

Taylor Owen: So maybe that question was framed the wrong way then, maybe it's actually what the broader tech world should be learning from the way biotech has embedded ethics and those considerations in their own practices.

Ellen Jorgensen: I think that would have been good, but we humans we're really great at hindsight. I mean, we're such a reactive culture. It's terrible. It really is. That's the thing that worries me most about anything is that it always seems that we never do anything until something bad happens.

Taylor Owen: Absolutely. On that, I don't know if that's an optimistic or pessimistic note to end on, but it feels like a nice place. So thank you so much for talking this through with us.

Ellen Jorgensen: Oh, this has been really fun.

Taylor Owen: Big Tech is presented by the Centre for International Governance Innovation and The Logic and produced by Antica Productions.

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Democratizing Science or Unleashing the Black Hats?

Following a discussion with molecular biologist Ellen Jorgensen about biotech’s vast potential, high stakes and the “inherent motivation to regulate,” Taylor Owen asks how we can ensure new technologies and the policies governing them are developed responsibly.

August 13, 2020
Taylor Owen