Chance Encounters

Front matter

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A BIOETHICS FOR A DAMAGED PLANET

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Contents

Note to the reader regarding the choice of images and sketches vii Prologue: Van Rensselaer Potter ix 1. A Foundation for Bioethics: Van Rensselaer Potter’s Legacy 1 2. Overview of the Arguments 9 PART ONE: SCIENCE 13 3. Research Ethics all the Way Down 17 The Curious Case of Paulo Macchiarini 17 What Is Philosophy For? 21 4. Against Dualisms 25 Debating Nature and Nurture 26 Genes-Environment 31 Epigenetics 41 5. Development and Ethics 51 Development and Environment 51 Development and Ethics 54 PART TWO: CHANCE AND CREATIVITY 65 6. A Dog Is a Dog Is a Dog: Of Nature and Values 69 7. A Process Ontology for Bioethics 77 Prehensions and Actual Occasions 77 Whiteheadian Fallacies 82 8. Time, Culture and Creativity 87

Time Is of the Essence 87 vi Chance Encounters

World-Making: Creating and Being Created 9. Symbiosis and Interdependency

PART THREE: EXPERIENCE 10. Medical Ethics and Environmental Ethics

11. Diseases, Disorders, Disabilities, and Norms Diseases: What They Are and Why It Matters Disability Canguilhem and The World-Making of Disease Judgements The Strange Case of Human Enhancement

12. Standpoints Epistemic Standpoints and Epistemic (In) Justices The Role of the Bioethicist: Diplomats and Idiots

Part Four: Troubles

15. Unforgetting The Past

16. A Creative and Forward-Looking Bioethics

Part Five: Bioethics

18. Development: Autism Research

20. Creativity: A Game Inspiring A Bioethicist

Epilogue: Thinking With Bibliography

92 101

109 113

117 117 122 125 130

143 144 149

155 159 167 175 181

187 191 205 211 219

225 231 245

Note to the reader regarding the choice of images and sketches

Dear reader,

The images and sketches that can be viewed in this publication were included in the following way:

By the bliss of chance, the author’s path aligned with ours — we are artists and researchers Christina Stadlbauer and Bart Vandeput (Bartaku). We both have a practice that is enquiry-based, crossing disciplines, mixing media and contexts. Kristien Hens invited us to provide visuals for her book.

We accepted, read the manuscript and observed many parallels and connections between our practice and Kristien’s line of work. In particular, our frequent collaborations with scientists bring out similar questions as those voiced in the book. These enquiries drive artistic research processes and create the basis of tangible art works.

Our visual contribution provides a different angle to view the landscape Hens describes. This means that the images are not mere “illustrations” of the text but rather complement the author’s analysis. We especially hope the imagery invites you to stay joyfully with the troubles that are discussed in Kristien Hens’ writings.

Thank you, Kristien, for inviting us to participate in this publication!

Prologue Van Rensselaer Potter

In which I introduce one of the original bioethicists

The purpose of this book is to contribute to the future of the species by promoting the formation of a new discipline, the discipline of bioethics. If there are ‘two cultures’ that seem unable to speak to each other—science and the humanities—and if this is part of the reason that the future seems in doubt, then possible, we might build a ‘bridge to the future’ by building the discipline of Bioethics as a bridge between the two cultures.

—Van Rensselaer Potter (Rensselaer Potter, 1971, p. vii)

© 2022 Kristien Hens, CC BY-NC-ND 4.0 https: //doi.org/10.11647 /OBP.0320.22 x Chance Encounters

‘COMPANION SPECIES 3

Be generous and you will attract someone relevant.

Practice to tune into time management and resilience of vegetal life forms.

From Christina Stadlbauer’s The Phytonic Oracle. A tool to read into the future, based on selected plants from the FlowerClock, 2022. Photos by Christina Stadlbauer, 2022!

1 Christina Stadlbauer, The Phytonic Oracle; participatory installation at “Plant Measures” exhibition, Finlayson Art Area, Tampere (FI), 2022.

1. A Foundation for Bioethics

Van Rensselaer Potter’s Legacy

How to live on a damaged planet? This was the question that the contributors to Arts of Living on a Damaged Planet asked themselves, a volume that was edited by Anna Tsing, Heather Swanson, Elaine Gan and Nils Bubandt and that appeared in 2017 (Tsing et al., 2017). At the time of writing, it is 2022, and a pandemic has thrown humanity off guard. COVID-19 serves as a wake-up call for many ethicists and policymakers. How do we go forward? How to prevent, mitigate or live with even more challenging disasters yet to come? What methods do we use? What should be the guiding ethical principles? What technologies are appropriate? How will they change us? What about possible future health crises related to environmental pollution and climate change? Bioethics is the discipline deeply invested in questions related to technologies, health, and biology. Today, in 2022, bioethical reflections on responsibility towards future generations, our position as human animals in the biosphere, and the limitations of medicine in the face of human health crises are more needed than ever. At the same time, mainstream bioethics has still to rise fully to the occasion when facing possible future calamities.

First, bioethicists like me may have ignored the situatedness of knowledge and ethical reflection. We have assumed that a toolbox of Anglo-Saxon principles such as autonomy and beneficence (Beauchamp and Childress, 1979), or more continental ones, including dignity, would suffice in maintaining an ethical biomedical practice. We have sometimes missed opportunities to engage with other value systems and marginalized standpoints. As Henk Ten Have writes in Bizarre Bioethics:

© 2022 Kristien Hens, CC BY-NC-ND 4.0 https: //doi.org/10.11647/OBP.0320.01

It [bioethics] is too distanced from the values of ordinary people and too far from the social context in which problems arise. Ethics should be ‘resocialized’ (i.e., located into specific contexts; for example, considering the setting of poverty with the lack of access to treatment). (ten Have, 2022)

Second, our perspectives were perhaps too fringe, too easily seduced by the lure of fantastic new technologies. Maybe disproportionally too much attention has been paid to the ethics of designer babies when the world as we know it is at risk of ceasing to exist. At the same time, the challenges humanity is facing are unprecedented. As I am writing these lines, most scientists and politicians acknowledge that it will be tough to keep the global temperature rise below 1.5 degrees Celcius. It is almost certain that generations after us will face unprecedented difficulties. Bioethics has a pivotal role as health, the environment, and new technologies have been the topics of our enquiry long ago. Still, until recently, environmental or engineering ethics have played a marginal role in bioethics conferences. Questions about environmental justice and where the world should be headed are often overshadowed by discussions about genetic privacy and the risks of genetic modification. Indeed, Arts of Living on a Damaged Planet contains contributions of artists, writers and academics working in anthropology, history, humanities, biology, feminist philosophy, botany, ecology, literature and genetics, but no bioethicists.

Since the second half of the twentieth century, bioethics has been heavily influenced by Georgetown professors Beauchamp and Childress’ book Principles of Biomedical Ethics (Beauchamp and Childress, 1979). This book laid down what would become the four principles of bioethics that every beginning bioethics student has to learn: autonomy, beneficence, non-maleficence, and justice. Since its publication, many have criticized it for valid reasons that will make their way into this book: the principles are too Anglo-Saxon, too Global North, too abstract and should be supplemented with situated knowledge and context-sensitive information, facts that Beauchamp and Childress themselves wholeheartedly agree with. What has not often been questioned is the task of bioethics with regard to science. Bioethics and the science it relates to are seen as two separate endeavours. Although bioethicists thinking about research ethics have

1. A Foundation for Bioethics: Van Rensselaer Potter’s Legacy 3 thought about how to do science ethically, as in not committing fraud and protecting the privacy and integrity of research participants, we have often taken for granted the starting points and the aims of science itself. According to Henk ten Have, this has led to a reduced critical potential. As such, the agenda of bioethics accommodates ‘the social and cultural context in which it has emerged’ without querying the underlying values that guide science (ten Have, 2022, pp. 26-29). We do not often comment on what science there should be, what science we should want, or what future such science should create. Bioethics and exact science are seen as practices with fundamentally different methods and finalities. As if they, in the words of PC Snow, belong to two cultures (Snow, 1993).

Bioethics has not always been conceived as a handmaiden to science and medicine. It is worth going back into the history of ‘bioethics’. One of the first people to think about ethics and science and the inseparability of health and environment was the American biochemist and professor in oncology Van Rensselaer Potter (1911- 2001), as is described in Henk ten Have’s book Wounded Planet (ten Have, 2019). Potter wrote two books: in the first, his focus was on bridging the gap between biology and ethics, and in the second, he developed a global bioethics that encompasses both societal concerns and more individual concerns, the latter being more readily associated with mainstream bioethics as we know it today. His first book Bioethics: Bridge to the Future, was written in 1971 (Potter, 1971). At that time, there was a need to think about a liveable future for human beings. Rachel Carson had described the potentially disastrous consequences of pesticides in her 1962 book Silent Spring (Carson, 2002).

Potter aimed to ‘contribute to the future of human species, by promoting the formation of a new discipline, bioethics’. We now tend to forget to mention his work in bioethics courses. Potter’s idea that ‘ethical values cannot be separated from biological fact’ is now often considered naive and potentially even dangerous. For Potter, ethics that can help us live and survive on a damaged planet should be based on biological knowledge, hence bioethics. However, for him, such biological knowledge cannot be reductionist or determinist. Potter argues that the biology he thinks our knowledge should be based on is holistic, not mechanistic, as was the predominant view in the twentieth century.

Such a view of life makes it self-evident to see nature and life as objects that can be manipulated and tampered with. Biological ethics should be based on ecological and ethical holism. According to Potter, life is full of chance, feedback loops, and disorder. This disorder is the raw material for creativity, for the potential of ethical biology to imagine and create a future for humanity. We need educated leaders who are trained in both science and humanities. He describes a Council on the Future, quoting Margaret Mead, to use ‘The future as a basis for establishing a shared culture’. Such an interdisciplinary council can function as a fourth power, independent from the legislative, executive, and judiciary powers, and needs to safeguard the future.

In his second book, Global Bioethics, Van Rensselaer Potter is disappointed that the bioethics he envisages has not taken flight (Potter, 1988). Instead, he writes, bioethics had become synonymous with medical ethics. According to Potter, there are two types of bioethics, medical bioethics, which has a short-term view, and environmental bioethics, with a long-term perspective. Both are part of ‘global’ bioethics, which considers different viewpoints, including the feminist viewpoint. His views in this book, especially his insistence on tackling overpopulation, are sometimes ableist and do not systematically consider the global south’s perspectives. Still, the idea of global bioethics that extends beyond the individual relation between practitioner and patient and has a long-term view of humanity’s survival as a goal is refreshing and sorely needed, especially now. So is the idea that life, science, and ethics are entangled. For Potter, ethics is based on science, as is evident from this quote: ‘As concerned humans, we “ought” to consider the “is” of earth’s carrying capacity and how it can be enhanced and preserved’. There may be wisdom in biology. At the same time, scientific practice should be guided by ethics and a desire to preserve humanity. Science and ethics are entangled in a non-hierarchical way.

With this book, I want to take to heart the hopes and dreams of Potter.! Following Potter, I argue that bioethics and biology are fundamentally entangled and show that bioethics should claim its position at the science

1 Iam not the first to do so, see for example Henk ten Have’s excellent book Wounded Planet (ten Have, 2019). I consider my approach complementary to his, as I will engage with posthumanist thinkers.

1. A Foundation for Bioethics: Van Rensselaer Potter’s Legacy 5 table from the design phase of research. Bioethics is not merely an afterthought. I also argue that bioethics can and should extend beyond medical practice or fringe cases such as genetically edited embryos and confront urgent cases such as the environmental crisis heads on. I use ideas from different thinkers, recent and less recent, that corroborate this idea. At the same time, I believe Potter’s framework needs some rethinking. I have found inspiration in feminist posthumanist thinking and standpoint epistemology. Speculative bioethics, a bioethics for the future of humankind, is necessarily also an intersectional bioethics. It is forward-looking but not utopian and takes the trouble and messiness of the present as a starting point to develop something better. For example, I shall not follow Potter’s somewhat problematic suggestion that restricting population growth is the main answer. In fact, I will not offer ‘solutions’ at all. I advocate for bioethics that stays with the trouble, in the words of Donna Haraway (Haraway, 2016). Quick fixes and simple solutions that strip arguments of all the ballast that may obscure them are counterproductive.

At the same time, itis not my aim to attack a ‘straw man’ bioethics. The book at hand is more a reflection on my readings of the last decade and a critique of my own earlier work than it aims to caricature bioethics as a field altogether. In fact, during the last decades, more and more voices have advocated for a more critical bioethics, often mentioning Potter’s foundational ideas. This book is as much a description of a personal journey as it is an academic work. As I shall argue that also in bioethics, situated knowledges (and thus a critical reflection on one’s own situated knowledge) matter, I think this approach is warranted. I am indebted to many great thinkers that have formulated similar ideas. For example, in her brilliant book Bioethics in the Age of New Media, Joanna Zylinska has pinpointed and criticized three main characteristics of ‘traditional’ or ‘mainstream’ bioethics: a sense of normativity, or being able to pinpoint what is the ‘good’, the rational human subject that can make a decision and is the source of this decision as a starting point, and the need for the universalization and applicability of the moral judgment (Zylinska, 2009). Zylinska offers an alternative: she is inspired by Levinas to advocate for a posthuman bioethics of ‘responsibility for the infinite alterity (i.e., difference) of the other, as openness and hospitality’, while at the same time offering insights from cultural and media studies. Her view on life is deeply relational:

What we are dealing with, however, is not so much a ‘human being’ understood as a discrete and disembodied moral unity but rather a ‘human becoming’: relational, co-emerging with technology, materially implicated in sociocultural networks, and kin to other life forms (Rogers, 2022)

I will also argue for a kind of posthuman bioethics that embraces entanglements of all levels of life, although I start from different thinkers than Zylinska.

Feminist bioethicists such as Hilde Lindemann have argued for situated knowledge and the inclusion of care perspectives and understanding experiences? (Lindemann, 2006; Lindemann, Verkerk and Walker, 2008). Scholars such as Jackie Leach Scully and Rosemarie Garland-Thomson have convincingly argued for including a disability perspective in bioethics (Scully, 2008, 2012; Garland-Thomson, 2012).

Moreover, many colleagues have suggested that bioethics should not solely be about individual relations and responsibilities. It should question the system it operates in. These colleagues suggested that we should marry bioethics and political philosophy. For example, Joseph Millum and Ezekiel J. Emanuel argue in their volume Global Justice and Bioethics that bioethics must move away from parochialism:

The facts of globalization mean that a responsible bioethics must address problems of international scope. But the expansion of the scope of both theories of justice and the problems of bioethics into the global arena means that the concerns of the two now intersect to an unprecedented degree. Consequently, it is now impossible to engage with many of the most pressing problems of bioethics without also engaging with political philosophy (if, indeed, it ever was possible) (Millum and Emanuel, 2012).

In Global Bioethics, Henk ten Have advocates for bioethics that acknowledges the impact of globalization on health and also questions the social, economic, and political context that is producing the problems at a global level. In Wounded Planet ten Have is inspired by the works

2 See for example the recent volume The Routledge Handbook of Feminist Bioethics, edited by Wendy A. Rogers, Jackie Leach Scully, Stacy M. Carter, Vikki A. Entwistle and Catherine Mills(Rogers et al., 2022).

1. A Foundation for Bioethics: Van Rensselaer Potter’s Legacy 7 of Van Rensselaer Potter to argue for bioethics that extends beyond biomedical ethics to include environmental ethics (ten Have, 2019). In Naturalizing Bioethics, the editors, Hilde Lindemann, Marian Verkerk and Margaret Urban Walker, advocate for a new interpretation of naturalism in Bioethics that includes situated knowledges and analysis of power structures rather than assuming that knowledge can be produced from an Archimedean perspective:

Our naturalism, however, does not privilege institutionally organized natural and social scientific knowledge but also embraces the experience of individuals in personal, social and institutional life. Our naturalism is also wary of idealizations that bypass social realities and of purely ‘reflective’ approaches to ethics that are apt to reflect only some, and usually the socially most privileged, points of view regarding the right, the good, and moral ideals such as autonomy, respect, beneficence and justice (Lindemann, Verkerk and Walker, 2008, p. 5).

In this book, I want to stand on the shoulders of these giants who have laid the foundation of rethinking bioethics to make it relevant to the challenges we are facing. In the words of Potter and Joanna Zylinska, I believe it is possible to reclaim bioethics as proper ethics of life. Such ethics of life includes thinking about the lives and health of humans and other-than-human beings, the macrocosmos and the entanglements of all these entities. In what follows, I investigate how to imagine bioethics as a discipline in times of superwicked problems,’ using ideas from process philosophy, biology, and feminist posthumanism.

Such an approach implies that bioethics is a grand project that focuses on interpersonal and interspecies relations but that at the same time is political and, to use Isabelle Stengers’s words, cosmopolitical (Stengers, 2005). The description of bioethics as a ‘meeting ground’, as Onora O'Neill has called it, is more than ever accurate (O'Neill, 2002). It also means that we take Van Rensselaer Potter’s idea of bioethics seriously as a foundational approach permeating all scientific practice levels. Next to positioning bioethics in relation to other sciences, exact sciences, philosophy, and humanities, I also use a specific concept of life that I

3 Kelly Levin and colleagues described the term “super wicked” to characterize a new class of global environmental problems comprising of four key features: time is running out; those who cause the problem also seek to provide a solution; the central authority needed to address them is weak or non-existent; and irrational discounting occurs that pushes responses into the future (Levin et al., 2012).

think should guide bioethics. I have borrowed this concept from systems thinkers such as Stuart Kauffman, Donna Haraway and Lynn Margulis and developmental systems theory and process philosophy. Arguing that there should be more dialogue between the sciences and bioethics and philosophy, also on very conceptual and fundamental issues, and at the same time already committing to a particular processual view on life and the universe may look contradictory. Perhaps this need not be the case. For one, process views on life offer us a way of looking at science in a way that both acknowledges the historicity of particular thought and the idea that such acknowledgement does not mean that we have to buy into the idea that everything is relative. At the same time, a new materialist or process view on matter and life also entangles ethics and science at its core. Science is as much about world-making as it is about describing the world, and describing is also world-making. Getting science right is not separated from imagining what future we want. It is at this nexus that the bioethicist is at home.

2. Overview of the Arguments

In the first part of the book, Science, I shall suggest a rapprochement of bioethics and the philosophy of science, specifically philosophy of biology. I shall argue that getting the concepts and the context right in science is the first ethical step for scientists. Hence, the practices of philosophers of science and bioethics are not so different, although there seems to be a wide gap between these disciplines. I will use the example of genes and a developmental approach to genes to demonstrate this. There is a place for a philosopher or ethicist right at the beginning of the table from the moment that research is designed. The philosopher or bioethicist can function as a benevolent gadfly to ensure that concepts employed, be it genes or autism or development, are straightforward and consistently used by researchers in interdisciplinary projects. I will point out the many issues at stake in research projects and how these reinforce outdated and dualistic views on life that are not conducive to a progressive science. An ethical research practice is a self-reflective practice. I contend, perhaps too quickly, that in the case of genes, this means adopting a long-term, developmental, and dynamic perspective on life.

In the second part of the book, Chance and Creativity, I continue on the path of a developmental outlook on life. I argue that such an outlook implies that bioethics focuses less on what we can control, for example, what we can know from our genes and more on dealing with chance and uncertainties. I use ideas from Alfred North Whitehead and process philosophy to challenge a representational approach to bioethics. I describe concepts from Stuart Kauffman and others to introduce aspects of creativity in life and explain how they view life as fundamentally creative. I also describe new materialist entanglements of ethics, ontology, and epistemology to argue that, given this creativity of life and the universe, ethics is implied all the way down. Moreover, describing

© 2022 Kristien Hens, CC BY-NC-ND 4.0 https://doi.org/10.11647/OBP.0320.02 organisms and practices, and choosing how to describe them, is not a mere representation but creates possibilities for our world’s future. Living is finding creative solutions and reflecting on the worlds we want our practices to create. Each ‘chance encounter’ entails possibilities. Our choices and words are deeply ethical. The fact that we make our worlds depending on the things and creatures we encounter, and hence also make ourselves, means that understanding life is understanding experience.

In the third part of the book, Experience, I return to one of the central tenets of bioethics, that of biomedical ethics. I describe how there is a rich literature on concepts of disease in the philosophy of medicine— understanding what we mean by health and disease influences how we think about the ethics of medicine. Given my commitment to development and process philosophy, I shall describe a thoroughly biological and normative way of looking at pathology and health, that of Georges Canguilhem. I shall conclude that if we take the normativity of concepts such as pathology seriously, we should pay attention to experiences and situated knowledge. Such sensitivity to experiences is relevant in the encounter between an individual patient and their caregiver and in evaluating the impact of systemic decisions. Ensuring an ethical scientific and clinical practice entails including the viewpoints and explicitly paying attention to those who have held marginalized positions in healthcare. If we want to understand what health and pathology mean for different people, this means engaging honestly with those who have been ignored.

Acknowledging the situatedness of general, clinical, and scientific knowledge, in particular, means that bioethical practice must be intersectional. In the fourth part, Troubles, I develop ideas around intersectional and speculative bioethics. I use Donna Haraway’s notion of Staying with the Trouble to argue that bioethics should not strive for quick fixes or easy answers to complex questions. It means caring for such a future and thinking with philosophers, scientists, and everyone whose interests are at stake. In a ruined world, the private and the political are intrinsically intertwined. In times of existential principles and moral theories are helpful tools that can help us approach specific problems, but they do not provide straight answers. Our focus must be on a liveable future for everyone, both human and other-than-human.

2. Overview of the Arguments 11

How to get to such a future is not so mucha puzzle to be solved as it is an exercise in creativity and playfulness. At the same time, staying with the trouble also means thinking of ourselves as trouble and the troubles we make. It means being aware of the world-making of humans and other beings. In the fifth part, I will use the concepts of risk, autism research, animal ethics and my own journey in a computer game as examples of practical ethical questions and methodologies that urge us to stay with the trouble of our own and the world’s limits.

This book is not the result of the solipsistic endeavour of one academic philosopher. Its title, Chance Encounters, is as much a reference to those instrumental in forming the ideas in this book as it is to a specific view on life and creativity. It is thus dedicated to all friends and colleagues who have become friends that have shaped my thinking. ‘Chance’ (or ‘sjans’) in Dutch is colloquial for ‘good luck’. I am fortunate to collaborate with a brilliant team of inspiring people. Dear team and dear colleagues, you know who you are. This book is yours as much as it is mine.

Part One: Science

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)

Microbial seasonal colours in a cooling tower of Tihange nuclear power station.

How to express the relationalities of the micro-organisms within a cooling tower of an electric power plant and its milieu.

From: Research on attunement with microbes in cooling towers and lungs. Sketch by Bartaku, 2022!

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/

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-a-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

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.

© 2022 Kristien Hens, CC BY-NC-ND 4.0 https: //doi.org/10.11647/OBP.0320.03

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.