‘Engaging with Ethics: Biological Sciences and Political Philosophies’ … Where Are We Now?
Élyse Willan, External Affairs
November 18, 2020
This is a condensed transcript of Right of Reply’s episode titled ‘Engaging with Ethics: Biological Sciences and Political Philosophies‘. This transcription has been edited for clarity. Please direct any inquiries regarding this podcast to Right of Reply’s current directors: Itamar Kofman, Coleman Campbell, and Natalie Woodland.
In the winter of 2019, the Queen’s International Affairs Association’s podcast Right of Reply sat down with Queen’s University’s Dr. Colin Farrelly to discuss bioethics and the philosophical debates surrounding genetic intervention. Since then, gene-editing has re-emerged in mainstream conversation. The recent Nobel Prize in Chemistry was awarded to Emmanuelle Carpentier and Jennifer A. Doudna for the development of the CRISPR/Cas9 gene-editing tool.
CRISPR/Cas9 is “a genetic manipulation tool derived from the defence system of certain bacteria against viruses and plasmids” and has recently been used by one Chinese Scientist on twin embryos to cut out a gene that predisposes humans to HIV - Dr. Farrelly mentions this in the interview. What he didn’t mention was that this scientist - He Jiankui - actually landed a prison sentence in December of last year for engaging in illegal medical practices. Alcino J. Silva of UCLA recently came out with research that the gene-altering procedure may have done more than just reduce the likelihood of contracting HIV but could potentially enhance the twins’ cognitive function; whether or not Jiankui intended the procedure to have this consequence is unknown, but these consequences are exactly the reason his actions are so hotly disputed.
One side of the debate is optimistic about Carpentier and Doudna’s work on CRISPR/Cas9 in hopes that the technology can cure inherited diseases such as congenital blindness or sickle cell disease. The other side fears the unknown risks, the consequences of unequal access, and what the technology means for the future. The issue of building super-humans or ‘designer babies’ also creates deeper concerns of both morality and security. To find out more about these concerns and what philosophy has to do with science, the Observer’s External Affairs branch brings you a transcript of Right of Reply’s episode ‘Engaging with Ethics: Biological Sciences and Political Philosophies’.
ROR: Let’s start with a bit of a background on Dr. Farrelly. He’s a professor at Queen’s and a Queen’s National Scholar in the Department of Political Studies. In addition to spending the last ten of his twenty-year career here at Queen's University, he has also held academic appointments at UCLA, Oxford University, Waterloo University, and Birmingham University. The author and editor of six books and approximately fifty Journal articles, Colin has published works in political science, philosophy, law, science, and medicine. Colin is also involved in volunteer initiatives to teach political philosophy and ethics to prison inmates and elementary school children. And with that, we will get right into the questions.
ROR: At Queen’s, you held appointments at both philosophy and the political studies department, and you teach at the school of Public Policy. How do you see your research as connecting these different disciplines?
CF: I’ve certainly taken an unconventional path in my career. All of my degrees are in philosophy and I started my career in the philosophy department. Then I switched to teaching political science about 19 years ago. As you’ve mentioned, I taught at two schools of Public Policy: here at Queen’s and UCLA. What unifies those is a concern for connecting ethics and more abstract reasoning about questions such as ‘what do we want as a society?’ and ‘what is a good life?’, with practical concerns of policy such as ‘how can the theory help inform the policy?’. To integrate those two things is challenging; a lot of the work I do is in the life sciences and is informed by insights in medicine. I’m kind of always oscillating back and forth between understanding the empirical realities of science and updating the theories that philosophers have been developing over many, many centuries. I find it rewarding to bridge that gap.
ROR: In your book titled Genetic Ethics: an Introduction, you use Bertrand Russel’s definition of eugenics which is “the attempt to improve the biological character of a breed by deliberate methods adopted to that end”. This is a two-part question - first: is eugenics inherently wrong or unjust? And second: can we avoid the mistakes that were made in the past concerning these issues?
CF: It's a very timely and important question, so there’s a lot of debate around what eugenics means. Often, people will just hear about the prospect of genetically engineering humans and think “well that’s eugenics, we shouldn’t do that”. I started deliberately with Bertrand Russel’s definition I think it’s a provocative one, which is simply the aspiration to improve the biology of a species. We do eugenics with plants and animals. Should we do it with humans? I give some contemporary examples that I think are eugenics on this definition. Prescribing women of childbearing age to take folic acid, immunizations, putting fluoride in the water that we drink: I think all of these things try to improve our biology in different ways to reduce the likelihood of births with neural-tube defects, to help protect us against infectious diseases or to help prevent tooth decay. Even education you could say is an attempt to improve our biology, the neurocircuitry of our brains. The devil is really in the details about what is the end and what are the means. There are certain ends that are morally sound such as improving the health of a population. It does depend on the means to get there, vaccinations, for example. We don’t coerce people - we don’t put people in jail - for not getting vaccinated, but we do require that if your children are going to go to school there’s a certain protocol you have to follow. We try to find the right balance between respecting the notions of pluralism and liberty but also paying attention to the importance of public health. I think that’s the same attitude we should have with genetic engineering. It is another tool that could be used for promoting morally laudable aspirations - provided it is empirically sound and the means are fair and reasonable and not coercive. In the past, things like sterilizing the unfit or ideals of racial hygiene were morally repulsive unjust policies that weren’t predicated on science, they were just prejudiced. So if the science is sound and the morality is sound, then I’d think we might be morally obligated to pursue genetic engineering of humans to make our lives more healthy and happier.
ROR: I just have a follow-up question for that: how can we tell if the science is sound? It’s been a huge problem in the past with things like racial hygiene. Most people thought that that science was sound back in the colonial wars.
CF: We do have established protocols. When it comes to gene therapy, throughout the world, there are 2800 clinical trials. The first human that was the subject for a clinical trial was Ashanti DeSilva in 1990. Ashanti was born with SCID which means that her immune system didn’t work, and children with that condition typically don’t live very long. It raised this profound question of ‘how do you experiment on human beings?’. When you look at the literature on clinical trials that have nothing to do with genetic intervention but any drug or medical procedure, first, you have to test in non-human animals such as mice. Humans aren’t mice, so when you go to phase one, you start with a small scale of individuals and you are just testing for safety: like, ‘what is the right dose of this medication or gene therapy to give?’. Today, there have been clinical trials on blindness; people have had genes inserted to help correct certain types of congenital blindness. You're always testing for safety and efficacy; if at some stage in the clinical trial alarms go off that it's not safe then you stop the clinical trial, but there's also a cost with not intervening. When we consider what [are] the ethics of experimenting on humans, most clinical trials for gene therapy are with cancer - and these will be people that are not responding to radiation and chemotherapy. If you don't intervene, the likelihood of death in a few months is very certain. It is that kind of trade-off where you inform the patient ‘this is going to be an experiment, we have some empirical basis for thinking it could help, but there are no guarantees, would you like to undertake the experiment?’ so that might give them an extra couple months or years of life. You have to balance many different [factors, which is] certainly not an easy thing, but if we're too risk-averse, no innovation in science will happen because every intervention initially starts as an experiment.s the empirical evidence comes in, you try to refine it and then make it more widely available.
ROR: Just a follow-up on that: is the balance between having a certain amount of risk and having a certain amount of science (...) the best method of advancing science currently, or are there other methods out there?
CF: Some people will invoke different kinds of principles or rules. If somebody evokes a precautionary principle and simply says: ‘if you don't know exactly what this is going to do, don't do it because it could be worse’.-With environmental regulations, for example, a lot of people say that [when talking about] genetically modified crops. The challenge with that is it usually is fixating on one risk: the risk of the uncertainty of the unknown in the future, but there’s also a risk with inaction. I think the most kind of morally-sound attitude is one that tries to balance and looks at the big picture. Let's just say somebody says: ‘this patient could be cured of cancer, let's do it’ without really thinking through, whether there are other interventions that might add quality of life that we know will be successful, why would you try this novel experiment? So I think there's disagreement about the weights to place on the variables, but I don't think there's a morally-sound alternative to trying to do this kind of cost-benefit analysis - but, of course, there might be champions of some rival. I just think that that's how the science progresses, is through methodical research, making some provisional attitude about it, changing in light of new considerations, and then when the confidence is there, move forward.
ROR: What do you think are the main benefits and drawbacks of the prospect of genetic intervention in the 21st century?
CF: I think there are sound reasons for being optimistic - especially when it comes to single-gene disorders. Some people are born with genetic mutations that will limit their health prospects, and certainly one could talk about early-onset genetic disorders. Most of those are rare, so there are clear cases where the genetic lottery of life is severely disadvantageous to certain individuals, but they’re rare. Most diseases are multifactorial and it's a complex interplay between genes and the environment. I think the most significant advance that’s likely to arise in medicine in the 21st century will be an intervention that helps protect against chronic diseases in late life, which will probably entail modulating the way we age. The big picture is if we could help prevent, treat, and maybe even cure certain types of genetic disorders and our vulnerability to multifactorial disorders, this would be another great tool of science. We’ve already had lots of tools to help us fight infectious diseases. Maybe infectious diseases gene therapy might prove to be very effective. Some people have a natural immunity to HIV and if you could develop a vaccine that mimics that kind of biology for other humans, we might have a vaccine for HIV. The drawbacks are what I stated before about the balance of these things. Also, it's not unique gene therapy; it would be a unique problem for any potential area of science where you want to make sure the evidence is there and you want to be somewhat cautious. However, you don't want to stifle innovation - when we get into discussions of longevity science there are some unique ethical and social concerns that people typically raise.
ROR: What about genetic intervention just for utility? If somebody would want a bigger stronger, faster baby, what would be the moral and philosophical argument?
CF: There is quite a large literature now around the idea of enhancing humans. The two areas where we already see human enhancement creating a lot of controversies is in athletics and the military. Athletes have an interest in enhancing themselves and being the best athlete, and the country that has an enhanced military would also have some competitive advantages. We can also talk about a regular person trying to enhance themselves. There is a lot of debate around whether or not there's a difference between therapy and enhancement, and even though I described the main benefit of genetic intervention being a therapeutic kind, it's linked with enhancement too. I think we will need to enhance our biology to promote human health in the 21st century. We get to the raised concerns about ‘designer babies’ and parents choosing particular genetic dispositions of their offspring. Or, if we talk about genome editing, you’ve probably heard about the news that came out from China in November about allegedly the first twin babies that were born and one had both mutations that make you susceptible to HIV knocked off. These things are very controversial because it's too early to experiment on healthy embryos. But yes, how far should parental discretion go? I think as a society, we have to undergo this debate. I come down more on the side of allowing a little bit more leeway and reproductive freedom, but it does depend on the details of what the parents want - most parents want the best for their kids and focus on having healthy children - but you could envision some parents that might have particular genetic interventions in mind to try to mould their children into their vision.
ROR: Just a follow-up question to that - where do you find most scholars in the fields of politics and philosophy fall in that debate?
CF: a full spectrum: you do have bioconservatives, as conservatives typically prefer the tradition that human biology is fine as it is. Michael Sandel is a very prominent political theorist who writes on this topic and he says this quest for perfection robs us of our appreciation of the gift of life. Jurgen Habermas who is one of the most famous political theorists in the world cautions against this idea of trying to control the genes of future generations. Then you have people like Julian Savulescu and John Harris that are pro-enhancement, somebody else like Allen Buchanan who is anti-enhancement, meaning he thinks the arguments against enhancement are bad, but it depends on what the enhancement does. You get the full spectrum; that makes it fun because you get lots of these philosophical debates on both sides. I think that usually, the conservative position over-romanticizes our biology and doesn't take seriously the cost - we've evolved through evolution by natural selection and it didn't care about us being healthy, it didn’t care about being happy. We do care about those things, so if we're going to intentionally modulate our biology as soon the science is there, then I think of course we will go for it. We’ve already tried to do that through our environment by creating environments where we can be safe, eat food that's good for us, exercise, and surround ourselves with people that are good for us. So why not pursue the same aspirations from within?
ROR: Going back to what you were talking about with some people maybe modifying the genetics of their children: should we be concerned with this access and does it threaten further inequality? Will there be a new class of designer babies that will take over the world so to speak?
CF: That is a very pressing issue that comes up. It is an issue I’ve written a lot about and it is one of the first concerns that people raise. I don't think it's an objection to moving forward in this direction. The way I try to ease people’s concern about that is to first point out the inequality we already have when it comes to our genetic endowments. Some people are born with severe early-onset genetic disorders and at the other end some people are born with the genes that make them resistant to cancer, heart disease, and stroke through the 70s, 80s, and 90s, so we have a lot of genetic inequality already. So, if we were to say we're not going to do anything with these technologies, we would be allowing a pretty stark inequality to persist. No medical innovation is initially equally accessible to everyone in the world. The sanitation revolution in my view is the most important medical advance ever. Tragically it's still not equally accessible to everyone in the world. There [are] hundreds of millions of people who lack access to clean drinking water which is due to a variety of factors. It's a complex technology, so it requires a pretty sophisticated infrastructure, affluence, and government regulation. If we were to envision a pill that enhances cognition or slows down ageing, that would be like talking about technology like nutraceuticals which are small pills that help protect against iron deficiency or say the birth control pill. With those types of technologies, it's usually research and development that's the biggest challenge and then the dispersion of the intervention - it’s not that it didn't take that long for the birth control pill to be more widely accessible throughout the world (though there are other forms of birth control). [The] Sanitation Revolution is unique - let's say, getting specialized heart surgery where you need a physician, that’s (…) not going to be available throughout the world.o, depending on the technology, it's certainly a concern, and we kind of have to think about a realistic time frame of when something first comes into existence to when it will be widely available. But if we prioritize these interventions as being important for social justice, we might get those things more widely dispersed rather than allow those inequalities to persist for a very long time.
ROR: Do you think that particular countries or regions would be more interested in these innovations more so than others?
CF: China’s an interesting player in this because of the rigours of the FDA regulations in the United States. Many critics would argue that to some degree the rigours of the clinical trial protocol are holding back innovation because it requires hundreds and sometimes thousands of people to be involved in a clinical trial. China has a different approach to this: the critics would say it's rushing too fast, it's cavalier, it's not letting the science [catch up]. Then the critics against the kind of rigours of the U.S. case would say by the time any innovation makes it through, there are going to be hundreds of millions of people that are already succumbing to these chronic conditions. I think (...) to be competitive will probably compel more developed countries to revisit these things because China is forging ahead. (...) There is a risk; it's a risky strategy for China, it could turn out that they compromise the science and there are people that are in these experiments that have tragic results or that they nudge ahead in the competitiveness. (...) I think all countries - especially more affluent countries - have an interest in being at the cutting edge of science and technology if you want the population to remain healthy. I think that the U.S. is the biggest if you look at the amount of funding that goes into gene therapy experiments. They are the main player in that field.
ROR: Prenatal screening is a practice that is already in place in some countries, especially for ageing parents. What are these types of practices a precursor to?
CF: Everyone's probably familiar with the idea of having screening done while a woman is pregnant. Newer technology allows us to screen those for genetic disorders. If a couple has already had a child that died early in life because of a genetic mutation they then decide to go through IVF, they have a laboratory examine to see which of these embryos doesn't have that gene. Then they try to implant those embryos and hopefully have a healthy child. One issue that is hotly debated is the idea of sex selection because you can also screen for the sex. Sometimes it’s for medical reasons because males are usually a higher rate of some of these sex-related disorders [so] you might select female as a way of guarding against the genetic disorders that afflict young boys. One of the things we debate in my course is the ethics of sex selection: should parents be allowed to select embryos based on whether or not they want male or female? If parents wanted to pick the child that had the highest likelihood of certain behavioural characteristics such as cooperative, hard-working, or say, more prone to religiosity, certain moral dispositions. hen it becomes what we were concerned earlier about where it ends with designer babies and treating them like a consumer good. I think it's a fascinating ethical issue.
ROR: You write a lot about the topic of ageing and longevity. Why do you think this is such an important topic, and are there any particular social or ethical concerns that this kind of science raises?
CF: In my view, the ageing of the human species is the most significant story of the 21st century and I admit it’s a minority view. ... Every year I ask my students, when they take a seminar I teach on science and justice, and I say ‘have you taken a course where ageing has been a topic?’ and every year most of them say ‘no’. There might be a student who says ‘Oh, yeah, with pensions’ and to me, I think it's the most significant story. On the one hand, it's an amazing success story: historically, we had life expectancy below the age of 30 for 99.9% of our species’ existence, today it’s 72, and it’s projected to go to 81. So on one hand it’s an amazing success story but it's also an amazing challenge - never before in human history have we come up against the limits of our biology as a real threat to human health. It's always been things out there in the world like infectious diseases, smallpox, or war, poverty, drought but now people are living beyond the biological warranty period. Now we’re seeing hundreds of millions of people starting to develop and dying of chronic diseases like cancer, heart disease, and stroke this century, and the question is: how do we grapple with that issue? Right now we're tackling each specific disease of aging: there’s a war on cancer, there’s a war on Alzheimer’s, there’s a war on heart disease and stroke. It’s extremely costly and while I'm an optimist, I don't think we're going to eliminate any of those diseases. But a much more cost-effective approach, and one that I think the science is much closer to realizing, is to change the way we age which would simultaneously delay all the chronic conditions of aging and possibly shrink the period of time that people are frail and suffering disease. It’s a big issue because it's universal, it's a big issue because there's a gender component - typically daughters have a lot more responsibility caring for their parents because of the nature of patriarchal responsibilities. It’s also an extremely costly issue because economies will not be able to continue if we're constantly spending more and more and more tackling each specific disease of ageing.
ROR: If people are living longer, how will this impact things like health-based services or pensions?
CF: If we imagine we don’t change human ageing and we continue with what we’re doing, which is to try to stop people from dying - that's what most medical research is. You go for cancer treatment, and if you don't die, the therapy is successful. You might not have a great quality of life when you’re receiving the treatment, but success is measured by when you die. If we just extend - we’ll call it ‘the frail span of human life’ - the period of time where people are managing multiple diseases and they're suffering some serious limitations of cognition and physical mobility, that will be a continuing strain on medical resources. We’ll face a dilemma where we're spending more and more on the very last stage of life and having less available for keeping people healthy earlier in life or education. But if we did something about modulating the way humans age so that most people as they're older are healthier - it's kind of like preventive medicine. By modulating our genes we might be able to remain healthier in our 70s, 80s, and 90s, then it would mean there’s a delay of these diseases, and the longest-lived humans die faster and so they have a shorter period of disease at the end of life. The ideal is to extend the health-span of humans and then to shrink the frail span. But right now, what we're doing is expanding the frail span, we're not increasing the health span of humans. That is why in my view altering the way humans age would be the most significant advance in public health in the 21st century.
ROR: Why is it important to engage in philosophical inquiry with science?
CF: I think science policy is the most important area of governance for the 21st century. I've been teaching a course on science and justice for the last 15 years but it's not a very common course. We have lots of courses on, say, the political economy and what particle theory has to say but we have very little philosophical and theory-informed debates of science. You can talk about other important areas of science like climate change, but for the biomedical sciences, this science is progressing really quickly and the ethical debates and discussions are progressing kind of slowly, and are not that widely dispersed So if we don't have this conversation, the science will just steam ahead. Scientists are good at science but I don't think they're necessarily experts at ethics so unless you have conversations between people in the humanities and social sciences and people in the sciences - unfortunately, there's a lot of, sometimes, hostility towards each other, (...) if you care to talk to each other, I think you have to have that conversation so that the science that progresses is what I call ‘well-ordered science’. It's a science that's asking the right questions and taking us in the direction that we think is morally desirable, versus blindly steaming ahead simply because somebody wants a research grant and is doing innovative research. But there has to be the prior question: ‘is that innovative research morally desirable and socially responsible?’ and that's where the philosophy can help us think about those questions.
ROR: As you said, biology and biomedical sciences are increasing [quickly, and] it's a very fast science - are there any developments on the horizon that you are worried or excited about?
CF: I'm most excited about the field of what’s called Geral (geriatrics) science, which is the field of ageing research. There’s been a couple of molecules that have been identified as having an anti-ageing property; a few of these are now being tested. I think that's the thing to look for in the next ten years; there will probably be a pill that most people take that will slow down your ageing. It might reduce your fertility. There might be a trade-off there, but most people purposely try to curb their fragility already. I think Geral science is the field to look for that will be the most exciting. I do worry about the utilization of CRISPR in China where the twins that were born whose genome was edited to make them immune to HIV. I think that's rushing science too quick, so you’d want it to be empirically and morally sound science. There could be potential enhancing technologies that people with morally dubious aspirations, so perhaps what the military would do with enhancements - sometimes that scares me in terms of thinking ‘what kind of humans, what kind of soldiers would the military be mostly interested in doing?’ I’d hope that ethicists are overseeing those types of things. You can envision that type of domain being one where perhaps the ethical lens looks a little different.