In which I describe the deep entanglement of ethics and science.
The sciences of the Anthropocene are too much contained within restrictive systems theories and within evolutionary theories called the Modern Synthesis, which for all their extraordinary importance have proven unable to think well about sympoiesis, symbiosis, symbiogenesis, development, webbed ecologies, and microbes. That’s a lot of trouble for adequate evolutionary theory.
– Donna Haraway (Haraway, 2016, p. 49)
I don’t see anything out there that is not nature. Everything is nature. The cosmos is nature. Everything I can think of is nature.
– Ailton Krenak (Krenak, 2020, p. 7)
In this Part, I aim to describe the deep entanglement of science and ethics and what this means for bioethics. I do this not from ‘science and values’ studies or a poststructural perspective but, firstly, to reimagine the position of bioethics vis-à-vis science and suggest that bioethics can be an endeavour in the spirit of Van Rensselaer Potter. This means that the bioethicist’s role starts at the inception of a research project. Secondly, I use the topic of genes as an example of how certain ideas about biology have shaped how we think about ethics. The topic of genes also allows me to introduce my ontological commitments to developmental (‘epigenetic’) perspectives on organisms.
3. Research Ethics all the Way Down
© 2022 Kristien Hens, CC BY-NC-ND 4.0 https://doi.org/10.11647/OBP.0320.03
The Curious Case of Paulo Macchiarini
A biochemist and oncologist, Van Rensselaer Potter did not consider science and ethics separate endeavours. In his 1971 book Bioethics, A Bridge to the Future, he argued that bioethics should be a bridge between science and humanities to allow for a genuinely ethical science and ethics that aim to make such a science possible (Rensselaer Potter, 1971). In his view, bioethics is not merely biomedical ethics, focused on issues of consent and risks, but it is the foundation on which good science is built. Since then, many ethicists and scientists have thought this viewpoint was somewhat simplistic: science and ethics remain separate disciplines with different goals and methodologies. Bioethicists are welcomed in biomedical research projects, for example, to think about proper consent procedures and, if the project team is open to it, to engage stakeholders and query the opinions of patients and the general public. The idea that ethicists and philosophers could contribute to solidifying the conceptual framework on which a research project is built is not yet widely accepted. True enough, philosophers of science have done precisely this work, but their conceptual work is not often seen in the light of its ethical relevance. In what follows, I will argue that bioethicists, philosophers of science, and scientists can and should work closely together. I will use the example of genes and concepts of genes to illustrate why thinking about conceptual foundations is of utmost importance for bioethicists and why they should join forces with philosophers of science and demand a place at the project table of biomedical and scientific projects.
One of the biggest scandals in research ethics is the case of the Italian thorax surgeon Paulo Macchiarini (De Block, Delaere and Hens, 2022). He claimed to have devised how stem cell populated donor trachea, and even artificial trachea could be transplanted into living persons. He performed these procedures on several patients with damaged trachea. Seven of the eight patients who received artificial transplants died due to the process, leading to Macchiarini being indicted for aggravated assault in the autumn of 2020. Discussions about the case have focussed on how charismatic con man Macchiarini had fooled prestigious journals, funders, and renowned universities alike. For example, there was much media attention for how he conned NBC television producer Benita Alexander into thinking they would be married in Italy, blessed by the pope. Macchiarini was outed by several whistle-blowers and by the relentless work of Belgian thorax surgeon Pierre Delaere, who wrote several letters to the journals that published Macchiarini’s research and the ethics committee at the Karolinska Institute in Sweden, where Macchiarini was employed.
Nevertheless, it would be wrong to merely see the Macchiarini case as an exceptional case of mythomania and conmanship. Granted, the degree of the fraud and the tragic consequences are far-reaching and shocking. At the same time, there likely must have been something in the mindset of all the Macchiarini supporters, very often scientists, that would have enabled the scandal to occur. Moreover, the same attitude has led to enthusiasm in specific fashionable and promising areas of medicine, such as stem cell research and genetics in general. However, it has also led to underfunding in more mundane areas of science, such as research into infectious diseases. This enthusiasm for fringe science is understandable: we want to believe in the progress of science and scientists’ ability to do great things. People tempering the enthusiasm are considered killjoys or even Luddites.
Professor Pierre Delaere, a thorax surgeon, might be seen as one of these killjoys when he argued for the impossibility of Macchiarini’s procedure in 2015. He claimed that, given the nature of the trachea, not a mere standalone pipe but an intricate structure populated with veins, the technique Macchiarini had invented was logically impossible. It could only lead to suffering and death. He got the following reply from the ethics committee:
We find that the issues raised by Professor Delaere are of a philosophy-of-science kind rather than of a research-ethical kind. Accordingly, the Ethics Council concludes that, on the backdrop of the examined issues, Professor Delaere’s allegations of scientific misconduct are unfounded.
This reply is telling but, at the same time, not surprising. It sheds light on the presumed tasks of ethicists and research ethics committees. Their job is, so suggests this quote, to assess aspects of research that include proper informed consent, risk assessment, and return of results policies. These aspects were indeed also suboptimal in the Macchiarini case. However, there seems to be an assumption that it is not the task of the ethicists or the ethics committee to query the conceptual underpinnings of the science itself. The quote suggests that philosophers of science may have something to say about these underpinnings. However, the specific task of these philosophers of science in the process of ethics approval is unspecified. It seems that science should be left to handle its conceptual affairs.
We may wonder whose task it is, however. In fundamental research, hypotheses may be confirmed or rejected through new research. Usually, not much harm is done to human beings while doing fundamental science, although the practical applications of such science may do great harm. Nevertheless, the question remains whether there is a moral duty to ensure that research is at least plausible, given the scarce resources available to fund research projects. For example, consider the Human Brain Project, a ten-year research project funded by the European Commission. This project aimed to simulate human brain functioning in a computer to understand better the origin of conditions such as Alzheimer’s disease. However, two years in, the project’s goals and underlying assumptions were questioned, and Henry Markram, the project leader, was forced to step away from it (Frégnac and Laurent, 2014). Projects such as these are often presented as risky science—science with a high likelihood of failure—but at the same time, with immense potential. Therefore, money should be set aside for such fringe science. Otherwise, we may miss out on great opportunities. However, there is a fine line between a risky but promising science and a fluke. After all, when Italian neurosurgeon Sergio Canavero announced that he wanted to perform a first ‘head transplant’, this was called ‘fake news’ and unethical by bioethicist Arthur Caplan (Caplan, 2017). Nobody in their right mind would fund research into head transplants. However, both the head transplants and the Human Brain Project are based on the same flawed assumptions. These assumptions suggest that who we are, our cognition and our identity are primarily based on our brains. It is assumed that the rest of our body is a tool we can easily replace with someone else’s body or a computer. Moreover, in the case of the Human Brain Project, the additional assumption is that how our brain functions can be simulated on a computer. These philosophical assumptions have been investigated by philosophers of mind and philosophers of biology who have critically examined the existing scientific and philosophical arguments. The feasibility or even adequacy of a brain-in-a-computer simulation is built on shaky grounds: it is very probable that humans, and organisms with brains in general, are not (solely) their brains but their entire bodies. It is also likely that cognition does not work ‘like a computer’. Perhaps artificial intelligence, even so-called ‘strong’ artificial intelligence, is possible if we agree on what is meant by the concept of intelligence itself. However, such strong intelligence will not be analogous to human brains and will not be attained by mimicking brain functions. Hence, projects such as the Human Brain Project should have been rejected for funding precisely because of arguments from the philosophy of science.
The same holds for experimental clinical procedures such as the ones performed by Paulo Macchiarini. Pierre Delaere’s objections were indeed of a ‘philosophy of science’ nature: he argued that the operations performed were, in principle, doomed to fail. As we deal with a clinical practice involving patient procedures, the ethical implications are immediately evident. A risk assessment by an ethics committee should not only weigh the harms and benefits of a technique. It is true that, were such a procedure to work, it could help many people. However, as Delaere’s arguments demonstrated, the Macchiarini case is not analogous to the first heart transplants, where the risks were worth taking because the procedure can, in principle, work. There is no potential benefit in artificial trachea transplants as there is no chance that they will work. However, in prestigious research projects such as the Human Brain Project, where the dangers are not directly affecting actual patients, there is an ethical imperative to build them on conceptually sound grounds. Conceptual reflection in medicine has been done by philosophers of medicine and clinicians practising philosophy of medicine, such as Edmund D. Pellegrino, Jeffrey P. Bishop and H. Tristram Engelhardt, Journal of Medicine and Philosophy and the book series Philosophy and Medicine. I will return to some of the concepts from philosophy of medicine in chapter 11. What has become clear from the Macchiarini case is that conceptual work is relevant for research ethics as well and may even save lives.
When writing this book, the COVID-19 pandemic is still in full force. It is a wake-up call to scientists and bioethicists alike that an infectious disease caused by a virus can have devastating worldwide consequences. Of course, there are many countries where viral and other epidemics have always been present. We may wonder if Western hubris has caused research funders, researchers, and bioethics to be primarily interested in technologies and science such as stem cells, genetics, and computational models of brains. We can only speculate what the world would look like if more research had been done about the mechanism of infectious diseases or coronaviruses. Therefore, I contend that one of the tasks of ethicists who think about the ethics of scientific practices is to dare to question the underlying assumptions of that science. Hence, I argue that the philosophy of science and bioethics should inform each other to improve the science they reflect on.
What Is Philosophy For?
In the previous paragraphs, I argued that if we want to assess the ethics of a specific research protocol, it is not enough to take the science itself for granted and focus on research integrity questions and research aims. Instead, thinking about conceptual matters is also an ethical endeavour. In pandemic times, in the light of fake news, conspiracy theories and vaccine hesitancy, all hampering the progress in beating the virus, we often hear that ‘science knows best’ and must fight ignorance. Although I, in principle, agree with this statement, it does not mean that scientists never make mistakes or that concepts and assumptions in scientific projects are clear or sound. Later in this first part, I will use the examples of nature and nurture and of genes and environment to demonstrate how seemingly straightforward concepts are no longer so when we look at them with further scrutiny.
I argue that part of the task of bioethics involves thinking about concepts and presumptions made in biological and biomedical sciences, a job that traditionally befell philosophers of science. Still, we may wonder whether philosophy is really up to that task. Indeed, philosophers can investigate what kind of arguments scientists use and even their outlook on reality. However, can philosophers evaluate scientific concepts? Maybe the idea that a philosopher must have a place at the table with scientists from the conception of a research protocol is an example of hubris. Philosophers must not pretend that they know everything about the nitty-gritty details of the techniques used in technical detail. Their place must be at the margins, and they should be grateful even to have been allowed a place at the project table. Nevertheless, I think the reluctance to have philosophers and other humanities scholars involved from the conception of a project onward is unfounded. It is precisely because a philosopher or, in my case, an ethicist may not be fluent in the vernacular that they are also valuable at this stage. They can query inconsistencies and ask for clarifications. They can function as benevolent gadflies in science projects. They do not take concepts or presuppositions for granted and ask annoying conceptual questions like the primordial gadfly Socrates did in Greek society. Philosophers should, at the same time, cooperate with science in good faith, with benevolence, and as colleagues with scientists as they have the same goal. The relation between philosophers and ethicists, on the one hand, and exact scientists, on the other hand, is one of mutualism rather than parasitism. Moreover, philosophers can identify different forms of knowledge necessary to understand a phenomenon in all its aspects. In Part Three, I will argue that an ethical science of life automatically implies investigating experiences and different modes of thinking. Philosophy, and more broadly, the humanities, can add this as a valuable component to a research project.
The reader may object to the philosophy and ethics I refer to here. Indeed, philosophy is more than the philosophy of science, and philosophers have other jobs to do than help make scientific research projects better. It is true that for many, philosophy seems to be a grand endeavour, trying to think through humankind’s relationship with nature, with God, and what makes us unique. Preferably this endeavour is undertaken with the help of the grand philosophers that came before us. This type of philosophy may still be worth doing, even considering humanity’s significant existential challenges. Nevertheless, I think the philosopher we need, and most desperately need in desperate times, works from the trenches of research practices. In this respect, the idea of philosophical plumbing, conceived by Mary Midgley, is helpful (Midgley, 1992). Midgley is perhaps best known to the general public for taking issue with Richard Dawkins’ idea of the selfish gene (Dawkins, 2016). For her, the idea of the selfish gene was conceptually unsound, and I think nowadays we can agree with her, as my further elaboration on the concept of the gene will show. However, she was attacked as ‘not knowing the science’ by proponents of the selfish gene. How much more productive and beneficial could it have been, for genetic science in general, to have a Mary Midgley at the table querying basic assumptions and helping make science better? In an earlier book, The Myths We Live By, Midgley argues against scientism (Midgley, 2004). The idea of a value-free science is naïve: science has its myths and beliefs it takes for granted, although they are not ‘scientific’ per se. An example is the myth of geniuses accumulating knowledge, discoveries, and inventions.
Midgley compares philosophy, metaphorically, to plumbing. Like the pipes in plumbing, philosophy consists of hidden structures that we need that support us but that we do not think about very much. Moreover, plumbing engages with the messiness, and even crap, of the world. Midgley argues against sterile principles and lifeboat examples, in which ethics is reduced to a deliberation on the fair distribution of scarce resources. Philosophers should acknowledge and engage with actual situations and irreconcilable facts. ’Complexity‘, she states, ’is not a scandal’. Philosophers, just like plumbers, should get their boots dirty. Plumbers also deal with water and the unruly and unpredictable effects of water. They create flow when things get stuck. Philosophers deal with life and all its discontents. Plumbers work on joints and bring disjointed things back together. Philosophers, according to Midgley, are especially useful at the intersection of different disciplines. Philosophers, like plumbers, look at the bigger picture of the system. They can point out how everything is connected. Midgley writes:
But of course, philosophy is the key case, because it is the study whose peculiar business it is to concentrate on the gaps between all the others, and to understand the relations between them. Conceptual schemes as such are philosophy’s concern, and these schemes do constantly go wrong. Conceptual confusion is deadly, and a great deal of it afflicts our everyday life. It needs to be seen to, and if the professional philosophers do not look at it, there is no one else whose role it is to be called on (Midgley, 1992).
In her last book, What Is Philosophy For, Midgley argues that philosophy is more than ever needed as an ally to science in desperate times (Midgley, 2018). It is required because, like the plumber, philosophy can shed light on hidden structures, connections, and specific places where these connections go wrong. She ends the book by stating,
We shall need to think about how to best think about these new and difficult topics — how to imagine them, how to visualise them, how to fit them into a convincing world-picture. And if we don’t do that for ourselves, it’s hard to see who will be able to do it for us (Midgley, 2018, p. 208).
If we conceive bioethics as applied philosophy of life, I think the comparison of the plumber is adequate. In what follows, I shall give one example where there is a certain amount of philosophical and scientific plumbing. Still, more is needed, using the concept of nature and genes and their normative implications. Furthermore, although most individual scientists will acknowledge the shortcomings of a mechanistic view of life, it remains the case that conceptual schemes such as the dichotomy between genetics and environment still play an unarticulated role below the surface. For example, they play a role in what counts as objective science and in which scientific projects are considered worthy of funding. The nature-nurture discussion has also been a recurrent theme in bioethics, albeit sometimes not overtly acknowledged: think about specific discussions on cloning or embryo editing. It seems that we bioethicists should not only do the plumbing as contractual work for other disciplines but also fix our own sinks.
1 This sketch is part of a new cross-disciplinary Bartaku Art_Research strand featuring the internal and external entanglements of cooling tower microbiomes. It was made during The Institute for Relocation of Biodiversity research residency at wpZimmer, workspace for performing arts, Antwerp, 2022, https://wpzimmer.be/nl/residencies/diversifying-and-locating-relocation/