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Mildred Cho: Ethics in the age of easy gene editing

How do new technologies and techniques for altering DNA get used? And who gets to use them?

Do the guard rails for ethical science obstruct progress for the benefit of society or do they keep us safe? | Science Source/Pasieka

Do the guard rails for ethical science obstruct progress for the benefit of society or do they keep us safe? | Science Source/Pasieka

In recent years, the development of inexpensive genetic sequencing and easy gene editing technologies has given rise to a community of non-academic, amateur researchers who like to refer to themselves, only half-jokingly, as “biohackers.”

But, says Mildred Cho, a research professor who has published frequently about bioethics, such communities are not bound by traditional “first-do-no-harm” ethical norms that professional biologists and physicians adhere to.

There is, for instance, a group of such do-it-yourself researchers pursuing a low-cost insulin substitute that is free of patent protection; they hope to bring that life-saving medicine to millions who cannot afford it. On the flip side, Cho says, there are also bio-hobbyists who like to do things “just for fun” that could present considerable danger to society.

“Would you want your neighbor recreating polio in his garage?” she asks, rhetorically, adding that these deep and challenging concerns are better addressed sooner rather than later.

Join bioethicists Mildred Cho and The Future of Everything host Russ Altman for a provocative discussion about the shifting landscape in the ethics of biological research. 

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Russ Altman: Today on The Future of Everything, the future of ethics and biology and genetics. Well I think we all are aware that there’s been a revolution in genetics and biology over the last 20 years.

At the turn of the century, the first human genome sequence was sequenced. Three billion DNA bases, three billion from mom, three billion from dad, makes a human plus a bunch of other magic. Individual genomes can now be sequenced, your personal genome for less than $1,000. Some of the technologies used to study and manipulate DNA are becoming readily available. We’re seeing them in grammar schools and in high school biology labs, things that used to be only available in universities and other and in industrial research settings.

There’s a technique called PCR, the polymerase chain reaction. In fact, the inventor of that reaction and the winner of the Nobel Prize recently died, Kary Mullis. It can detect very small amounts of DNA and can be used to create larger amounts of that DNA through manipulation and experimental methods. Many of us have heard about the CRISPR discovery that allows us to edit DNA pretty easily. It kind of works. You can insert changes into the DNA, disrupt the functions of genes in plants, animals, and eventually perhaps even humans. There’s a proliferation of both good and bad information on the Internet making these ideas and these techniques very accessible. This raises an amazing array of both technical, but also ethical questions. Is it okay to manipulate the DNA of a living organism, for example to help cure disease, or just for fun? Should this be made available only to trained scientists? But what about hobbyists, and is that cow already out of the barn? How should we inform people, participants, or just bystanders about the risks of the things that are going on, especially things that we have never done before? What are the laws that regulate this? Do they apply equally to private citizens as they do to companies or academics or the government? It might be okay to cure a disease, but is it okay to manipulate DNA to create people with better athletic capabilities, and should we be doing that at a university, in a garage, at a company? A particular area where this comes to a head is the field of biohacking. Biohackers, as I understand it, use technology and biological knowledge and capabilities to manipulate both biological systems, often as a non-professional activity. It’s usually not part of a formal institution, so their responsibilities with respect to traditional research in an institution like a company or a university, there are rules about how to do the research, and there are I would say guidelines and even regulations that limit activities, and it’s not clear what role those have for private individuals, and yet they can do pretty powerful things.

My guest today is Dr. Mildred Cho. She’s a professor of pediatrics and medicine at Stanford University at the Center for Biomedical Ethics. Mildred, you have published broadly about ethics in biology and genetics generally, and I’ve recently been looking at biohacking. Can you give some examples of the biohacking that caught your interest and tell us why they pose interesting issues to you as a specialist in ethics?

Mildred Cho: Oh, well, yeah, there’s a lot of different ways that people think about biohacking and what it means to do biohacking.

Russ Altman: I found many definitions in preparation for our discussion that were quite different and quite incompatible even.

Mildred Cho: Absolutely, and I think that’s important because, and it caught my attention because from an ethics point of view, they fall on the entire spectrum of good to bad in terms of whether you think you would want that to be happening at your next door neighbor’s house in their garage or not or also because, as you mentioned, the regulatory and oversight systems that we have were built under the assumption that all this genetic manipulation and biology and science and technology is all done in these sort of institutions which means that a lot of things that fall under this category of hacking could be, as you mentioned, done under very unregulated circumstances, but let me go back to your question. So there’s sort of hacking in the sense that it’s an activity that is done for fun.

Russ Altman: Mm hmm, like a hobby.

Mildred Cho: It’s a hobby, it’s playing. People talk about playing a lot.

Russ Altman: And what are they doing?

Mildred Cho: And they’re just doing things to satisfy their curiosity. They’re interested in just doing things. What happens if I make a fish that glows in the dark? That’s just fun, it’s not for a particular —

Russ Altman: It might be fun, but that’s amazing that there are hobbyists who might have the capabilities to even take a stab at like taking genes from a neon tetra and making it like a neon sea bass.

Mildred Cho: Right.

Russ Altman: And are there examples of people actually doing this?

Mildred Cho: Yes, absolutely, and then there’s sort of the, the sense of hacking as in the word life hack, so it’s like a work-around, so we’re gonna make your life better by let’s say producing something like a food substitute that has all the nutrients involved, but doesn’t have any of the mess or bother of cooking.

Russ Altman: Like Soylent.

Mildred Cho: Right, it’s Soylent, exactly.

Russ Altman: One of my favorite movies from the 70s, you can all Google it, with Charleton Heston.

Mildred Cho: Absolutely, and actually people —

Russ Altman: “Soylent Green”

Mildred Cho: There were people who were trying to make something that was called, they called Soylent.

Russ Altman: Really?

Mildred Cho: Yes.

Russ Altman: Okay, so that’s very different. In one case, maybe the person is in their garage or in a lab at a school and they’re trying to manipulate the genetics of a fish, and there’s a whole bunch of issues there we can get into, and then there’s the second example you gave is quite different because it’s like I’m making decisions about what I’m gonna put into my body. I’m not changing any of the fundamentals of my body, although I may be changing my microbiome and things like that, and that all counts as biohacking.

Mildred Cho: Right, and then there’s sort of on the other extreme, there’s hacking in the sense that we talk about when we say somebody hacked into my bank’s computer, so obviously —

Russ Altman: The bad connotation.

Mildred Cho: Bad, theft, you know, vandalism, so biologically, the equivalent of that would be bioterrorism, weapons of mass destruction.

Russ Altman: So they’re playing around with anthrax or ebola or bad stuff.

Mildred Cho: Right.

Russ Altman: And they have nefarious goals.

Mildred Cho: Right, so that’s sort of at the other extreme, and then there’s even sort of back at the life hacking end of the spectrum, if you kinda keep going along that in that direction, there are people who are trying to create work-arounds for things that meet very serious unmet needs, so for example the Open Insulin Project. So insulin is, the production of insulin is a patented set of processes. There are versions of insulin out there. They’re very expensive, and of course for people who need insulin, it is —

Russ Altman: It’s not optional.

Mildred Cho: It’s not optional, and many people can’t afford insulin, and yet this is a drug that’s been around for decades.

Russ Altman: You could argue it’s surprising that it’s still under a patent because of how long we’ve known about it.

Mildred Cho: Right, so there are new patents that evolved because of delivery systems and other —

Russ Altman: How they make it.

Mildred Cho: Right, exactly. But bottom line is there’s still a lot of people who can’t afford insulin, so the Open Insulin Project grew out of a DIY bio lab.

Russ Altman: DIY as in do it yourself.

Mildred Cho: Do-it-yourself bio lab in the Bay Area to create a work-around to produce insulin that was open access.

Russ Altman: So open, everybody loves open.

Mildred Cho: Open right, sounds good.

Russ Altman: Sounds good.

Mildred Cho: And so that’s sort of at the other extreme of biohacking.

Russ Altman: Are they trying to, just to finish that thought, are they trying to do this in a way that doesn’t violate patents, or are they kind of in flagrant violation, but they don’t care?

Mildred Cho: That’s a great question. I think they’re quite cognizant of what the potential intellectual property barriers might be to an open access approach. There are potential ways in which you could avail yourself of an open access process of producing insulin that would not violate patent laws, but you basically have to really do it yourself. If you do something in your garage literally, and then administer it to yourself, you’re not necessarily violating any patent protection.

Russ Altman: This is The Future of Everything. I’m Russ Altman.

I’m speaking with Dr. Mildred Cho about biohacking. I just wanna say that even in my lifetime, I’ve seen the word hacking change literally a hundred — I think literally is the right word — 180 degrees in the sense that as a youth, hackers were people who knew how to program computers, and we were all proud to be hackers, those of us who were hackers were proud to be hackers. There was no negative connotation except possibly poorly-developed social skills, which is a different issue, but then it became rapidly associated with hacking as in kind of breaking into things.

In fact the word hack kind of obviously connotes breaking in with like a hatchet, and so now hacking in computer circles, hacking is more often associated, not just with people who like to program computers generally, but with people doing bad stuff, and it sounds like in biology, there’s this same kind of ambiguity where you have biohacking that seems — I don’t know if we’re gonna talk about whether it’s harmless, but it seems like it doesn’t have de novo nefarious goals, and then there is hacking especially in your example of people trying to do bad things. That’s clearly nefarious where the negative connotation of hacking is relevant.

So this is a huge range of activities, and as an ethicist, how do you break it down? How do you create bins for these different activities, or are you trying to find, get an overall theory that covers it all at once?

Mildred Cho: Yes, right, that’s a great question. So I think one of the central issues that ethicists that are concerned about sort of the ethics of innovation have been struggling with, and there isn’t necessarily a resolution to this yet, is the fundamental question of who is responsible for how a technology is used because I think this has been brought into very stark relief. If you look at arguments that people make that have developed social media platforms, and they say well we’re really not the, we’re not responsible for what people do or what they tweet or —

Russ Altman: We’ve heard a lot of this recently.

Mildred Cho: Exactly.

Russ Altman: We just created the platform; the content is from other people.

Mildred Cho: Absolutely, so now you just sort of take that argument and put it on biology. We’re just playing. We’re just, or we’re trying to do something good. We’re trying to create cheap insulin for people, and yet that same technology could be used to create, to re-create polio, so that’s the fundamental issue, and part of the reason why this issue, this sort of phenomenon of citizen science is so interesting and hacking and sort of now the broader inclusion of non-professionals into biology is interesting is that sort of that ethical framework for research is now also I think being challenged in some ways because it really makes it clear that in some ways, the answer to the question about what are the responsibilities of scientists seemed like they were clear. Do no harm, right, do no harm.

Russ Altman: And as a scientist at Stanford, I feel like, which I am, Stanford has set up some guide rails for me to make sure I don’t get myself into trouble basically. Sometimes it’s very frustrating, but it actually, ultimately is reassuring that they tell me if I’m doing work on humans, that needs to be approved by a human subjects committee, or if I’m doing work with toxic agents that needs to be managed carefully, or animal work where I have to make sure I treat my animals in a way that’s compatible.

So all of those things which, on a day-to-day basis, can be annoying because it creates a barrier, when I step back, I’m actually pretty happy to have all that ’cause I know that I’m doing my work with guide rails that are ensuring that I’m not doing something that society would find heinous. What I’m hearing you say now is these folks don’t have the benefit of those same guide rails, and so in some sense, we might be just trusting on their personal moral compass to make sure, and that seems a little bit risky.

Mildred Cho: Yes, but also looking at it, flipping that around a little bit, I think some of these projects like the Open Insulin Project also raise the question about benefit, and is there a responsibility to use and develop technologies in a way that they can and will be used for benefit, and is that a responsibility of professional scientists as well? I think some of these projects, these work-arounds have arisen because of a perception that the structures that we’ve set up don’t do that. They’re not meeting needs, whether it’s regulatory processes, intellectual property barriers, the way we set up the business of making drugs, what scientists are incented to do or not do, whatever all that is, it’s not working for some people.

Russ Altman: This is The Future of Everything. I’m Russ Altman; I’m speaking with Dr. Mildred Cho about biohacking.

We just got to the core of the issue which is that the guide rails that I just told you I find so useful might actually be, they might be actually obstructing progress for the benefit of society, and what I think you’re suggesting is that there are hobbyists or other people outside of traditional research who are calling us on this and saying I need to do it myself because evidently, for whatever reason, the folks at the companies or the folk at the universities are not doing it.

Mildred Cho: That’s right. I think you also see this with other types of, kind of do it yourself movements. For example there are people that have set up biobanks for stool, that is poop. Can I say that on the radio?

Russ Altman: Absolutely, we could actually — this is Sirius XM; we could say a lot worse.

Mildred Cho: Okay, so poop biobanks.

Russ Altman: Poop biobanks.

Mildred Cho: Right.

Russ Altman: DIY poop —

Mildred Cho: DIY, and part of the reason for that is because again, an unmet need. There are serious diseases that people would like to use fecal transplants to treat.

Russ Altman: Yes, yes.

Mildred Cho: And you know, the FDA isn’t, hasn’t caught up with this and so forth, so —

Russ Altman: So let’s buy a refrigerator and some canisters.

Mildred Cho: Exactly, and so people have setup, including parents of children with intractable clostridium —

Russ Altman: Terrible disease, terrible disease.

Mildred Cho: That they want to be able to address, and there’s no hospital, there’s no doctor, there’s no drug, there’s no structure for them to deal with this, so they took matters into their own hands, so there are groups there that sort of have stepped into the breach.

Russ Altman: So there’s an increasing ecosystem, and I can see, and this is what we’ll discuss in the next segment, that the issues become what are their responsibilities and how can we facilitate good work or allow it, but do we also have to worry about bad things happening, and what are our responsibilities and roles and privileges and obligations in those settings? Well, this is The Future of Everything. I’m Russ Altman; more with Dr. Mildred Cho about all of these issues related to biohacking next on Sirius XM Insight 121.

Welcome back to The Future of Everything. I’m Russ Altman; I’m speaking with Dr. Mildred Cho about biohacking and the ethical challenges in thinking about a new class of active participants in biological engineering and research, citizen-scientists. So as an ethicist, when you look at these communities, both the good ones and the, I don’t wanna say good and bad. The ones that are pursuing noble goals, and the ones that have nefarious purpose, and everything in between. Is ethics come up? Is ethics a thing for these groups, or is it just a non-issue?

Mildred Cho: Well it turns out it is. It’s a thing. It’s even on the internet, so the group that is called DIY, do it yourself, Bio has a website, and they actually spent quite a bit of time putting together codes of ethics, a code of ethics.

Russ Altman: This is very impressive.

Mildred Cho: Which is very impressive. There’s a U.S. version and a North American version, and then there’s a European version, and they’re actually slightly different, which is also interesting, too.

Russ Altman: Can you give us just a quick —

Mildred Cho: Yeah, and I’ve also done a lot of looking at codes of ethics from professional biological research societies and scientific groups, and so it was very interesting to me to look at how they’re different because I wanted to know what did they think their responsibilities are in these two types of —

Russ Altman: I mean, I know that GMO foods are very different in terms of their public attitude in Europe and in the U.S. I don’t know if that has anything to do with the differences that you saw.

Mildred Cho: Yeah, well —

Russ Altman: But I wouldn’t be surprised if the GMO-type issues were an area of disagreement.

Mildred Cho: Well, I mean these codes of ethics are very sort of high-level principles.

Russ Altman: GMO is genetically-modified organism, or genetically-modified food. Sorry, I wanna make sure I don’t use lingo.

Mildred Cho: Yeah, so these are very high-level principles that they have, so they’re not specific to any specific technologies, but I was struck by how in the DIY Bio group, the first thing on both of these lists really spoke to the issue of open access, open access and transparency, and then somewhere down in the middle of the list, there’s safety and using these technologies or innovations for peaceful purposes, which is good, which is good, and I think the main difference that I saw with the European set of codes was really more a sense of communitarianism which you might expect.

Russ Altman: Gotta love the E.U.

Mildred Cho: We don’t believe in that in the North American side of things.

Russ Altman: On October 31st, they won’t believe it in the U.K. either.

Mildred Cho: That’s right. All for one and one for all, right?

Russ Altman: Oh my goodness, so there was more of a communitarian feeling in the guidelines from the DIY Bio in Europe?

Mildred Cho: Right, but what’s interesting is that on the professional side in these professional groups that are scientists, there are literally hundreds of codes of ethics, and almost all of them have this sort of apple pie statement about benefiting society as well as things like the science has to be valid.

Russ Altman: No plagiarism.

Mildred Cho: No plagiarism, which interestingly was not in the DIY Bio types of codes of ethics. So it’s much more about sort of the rigor of science, it has to be valid, also shouldn’t harm anybody, and there’s a positive a statement about benefit in almost all of those codes, which is interesting, but when you see how research actually plays out and how the DIY Bio groups have actually —

Russ Altman: Implemented their projects.

Mildred Cho: — Implemented their projects. I actually think that the do-it-yourselfers might actually have an edge of the professionals in terms of really kind of talking the talk and walking the walk in terms of benefit, and that might be because they’re sort of self-motivated, and a lot of them are motivated by a family member who’s very ill and needs something that isn’t there. They’re motivated by very personal goals to benefit somebody in a very concrete way.

Russ Altman: I really wanna follow that up. This is The Future of Everything. I’m Russ Altman; I’m speaking with Dr. Mildred Cho, and you just said something slightly shocking which is that perhaps the benefits being delivered by the DIY biology community, so I wanna make sure we capture that correctly because there are a lot of scientists and doctors at medical research and they’re doing a lot of research which at least, no — I might have drank the Kool-Aid too much, but it appears that a lot of these projects are leading to advances in medicine for diagnosis and treatment of diseases and care of patients, so could you just expand a little bit on the ways in which the professionals may be letting society down. Those weren’t your words, those were my words ’cause I wanna make sure we have a good understanding of that.

Mildred Cho: Yeah, no I realize that was kind of a provocative statement.

Russ Altman: It was a good one, it was a good one.

Mildred Cho: What I mean by that is that I think the sort of professional scientific community may be assuming a lot about sort of how beneficial their research actually is. They may have good intentions, but when you really come down to it, are these benefits actually coming to pass, and also there’s many scientists who actually believe that what they’re doing, the benefit of it is to create knowledge for knowledge’s sake and not necessarily —

Russ Altman: That’s true.

Mildred Cho: For a concrete benefit.

Russ Altman: Artifacts, artifacts that actually benefit, you’re right, you’re absolutely right. I know many scientists who say the pursuit of knowledge in itself is a valid goal, and if it has useful, practical benefits, that’s great, but that might not be what I, a particular scientists, am interested in. I’m just gonna get the knowledge, and I’ll let other people figure out if it can be used in good ways, and that might not be very prevalent in the DIY community.

The other thing that makes what you say ring true, and I must say, it does have elements of truth, is that when you’re a professional, then doing science or anything else, the issues of how you get paid, how you get credit, how you advance in the field, those all become very important to you just like they are for anybody who has a job, and that I could imagine obfuscating a more pure goal of creating things for the benefit of science, whereas if you’re a hobbyist where the rent is not paid by your hobby, the rent is paid by whatever your job is, you can have a much perhaps more pure approach to the discovery or the engineering because it’s not tied up in the ability for you to pay your rent next month. I’m just guessing, but is there an element of that in when you see these different guidelines?

Mildred Cho: Absolutely, I think it’s another way in which the structures and the organizations that we have that are set up to do science can sometimes create barriers instead of incentives for people to actually implement benefit out of their work.

Russ Altman: So these sound like a great set of observations that you’ve made, and I wanna ask, I guess I’m being a little bit Pollyanna-ish, and I am an optimist. Do you think now that we’ve identified these differences that there’s a possibility for kind of floating all the boats by looking at what’s happening in these different ethics codes and the associated activities and kind of having both sides of this coin learn from each other so that kind of progress is made in a more effective way, or am I being incredibly overly-optimistic?

Mildred Cho: I don’t know, I think there’s a place for us Pollyannas somewhere hopefully.

Russ Altman: Pollyanna was the word.

Mildred Cho: Yeah, so I think, I think there’s another sort of social movement towards engaging communities in research where I think that these two, these two kinds of trends can converge with science and how science is done because I think to the extent that a lot of citizen-science is done to sort of fill unmet needs, that’s a place where professional scientists can look outside their ivory towers and try to figure out what are things that really need to be done, and how can I use my knowledge and skills towards those goals?

Russ Altman: And that really is a very exciting possibility, and as you know, we’re seeing this in these hybrid collaborations of professional scientists with these citizen-scientist organizations who then have a very potent combination of capabilities for moving things forward.

Mildred Cho: Right, and also, I think that this allows us to kind of think about people, not just in organization of citizen-scientists, but just individuals and communities and patients, for example, in that way.

Russ Altman: Thank you for listening to The Future of Everything. I’m Russ Altman. If you missed any of this episode, listen any time on demand with the Sirius XM app.

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