Chance Encounters - A Bioethics for a Damaged Planet, Kristien Hens
Review by Rob Sips
In Chance Encounters, philosopher and bioethicist Kristien Hens addresses a broad range of topics in relation to the field of bioethics. The book is divided into five parts, preceded by a prologue where she introduces us to the work of Van Rensselaer Potter, whose work takes up a central position throughout the book. This review will take the reader through its parts and conclude with some reflections.
In Part 1, Science, Hens argues for a rapprochement of bioethics and the philosophy of science, focused specifically on philosophy of biology. In the spirit of Van Rensselaer Potter, Hens propagates that the role of the bioethicist should start from the inception of research projects. Hens turns to developmental perspectives on organisms and elaborates on her ontological commitments in this regard. She argues that genes and environment do not simply add up, but instead compares development with cooking, where an emphasis on the individual ingredients does not make sense cooking a meal. As Hens will do throughout the book, she weaves together bioethical case descriptions with philosophical and ethical reflections. While recognizing its merits, she critically examines the modern synthesis and the role and impact it had on science and popular imagination. A case that will come back throughout the book, that of autism and autism research, is first discussed in this light. Why, so Hens argues, would it be so important to find the gene for autism, rather than understanding what may help autistic people in their daily life? An ethical deliberation is therefore necessary in which autism and disability in general should not beforehand be taken as something that can or should be eradicated.
When Hens comes back to this point later in the book, she substantiates this claim with reference to the happiness levels of those with disabilities or divergent ways of being, showing that a different way of being does not per definition imply people are less happy. She argues that we should not take for granted research setups that appear to have the goal to eradicate neurodivergent or disabled ways of being, through e.g., embryo selection and other methods. While taking the position in favour of care, chance and possibility, Hens thereby does plead for and respects individual choice of future parents. As Hens will elaborate more on further in the book, she emphasizes that to truly understand causes and developments of disorders or behavioural atypicalities such as autism, development should be studied over long periods of time, whereby DNA, genes and their interaction with other factors are highly relevant. A strict ontological distinction between nature and nurture, she argues, is hereby mistaken.
Following, Hens elaborates on the field of epigenetics where the environment and the effects it has on the cell have become tangible. Epigenetics refers to a manner of looking at the way in which organisms acquire a specific form. She explains that the status of epigenetics has however not been received well everywhere, particularly not with geneticists whom regard the field of study with suspicion. Epigenetics, she argues, point us to a different, entangled and processual view of life, that while not new, stands in contrast with a mechanistic view on genetics characteristic of the modern synthesis view. While the idea that DNA and environment interact is well accepted, these interactions really become apparent in the study of epigenetics, Hens argues. What has remained highly vague in approaches of gene-environment interaction, is the concept of environment, a concept that can mean many things. It could be, so Hens exemplifies, the cellular environment, the things we eat, the city we live in or the parenting style we were subjected to. Perhaps, so she suggests, it is no longer valid to see the distinctions between physical, psychological and sociocultural spheres as separate from each other.
One important emphasis of epigenetics, Hens explains, is the idea that development is a process that organisms continue doing through interaction throughout their lives. Secondly, epigenetics emphasizes the importance of the environment and even culture, which can denote many different factors. The notion of ‘epigenetic landscape’ is one such conceptualisation to look at relations between culture and genes, that contrasts with the idea that biology is fixed and cannot alter over the course of lifetime. Hens elaborates with interesting case descriptions, intertwined with philosophical problems such as the non-identity problem in relation to embryo editing. What Hens asks us to take from the epigenetic view, is the openness to seeing life differently, through a dynamic view of biology. This view, elaborated further on throughout the book, emphasizes historicity, indeterminacy and chance encounters, where how life is experienced may be as important as understanding its mechanisms.
In part 2, Chance and Creativity, Hens proceeds to elaborate on her commitment to the developmental perspective. She argues that dealing with chance and uncertainty is fundamental to bioethics. Hens makes use of speculative philosophical thinkers, from Alfred North Whitehead’s process philosophy, to thinkers such as Ilya Prigogine, Isabelle Stengers, Stuart Kauffman, Karan Barad and Donna Haraway - whose influence and ‘wor(l)d-makings’ shine through the entire work. Common to these thinkers, in the reading of Hens, is that for them the reality of being is primarily characterized by processes, rather than mechanistically determined and fully predictable. In this view, (chance) encounters and choices are at least as important as strict governing laws.
Hens then introduces us to the work of Whitehead (1861-1947), a mathematician and philosopher who with his focus on relations and processes gave rise to what we now refer to as process philosophy and process theology - a line Hens traces back to the philosophy of Heraclitus. Whitehead, fundamentally regards nature as a tissue of internally related events. This stands opposed to a mechanistic view on nature as a clock composed of gears and wheels that work together, whereby the parts can be considered separately. Hens explains that Whitehead’s ontology is an event ontology, whereby the time dimension is crucial. An ‘event’ or ‘actual occasion’ is not deterministically defined by its history, but facts from the past cast a shadow of potentialities over the present. Integrating these facts from the past into the present, Hens paraphrases Whitehead, means considering these potentialities – an experience Whitehead denoted as a ‘prehension’. Because of this moment of prehension – a moment of indeterminacy or even choice in a prehension -, so Hens argues, it is not possible to automatically deduce the future from the past. What Hens fundamentally takes from her reading of Whitehead, is to conceive reality as an entangled maze of relationships, whereby through prehensions new events come to incorporate past events in a non-deterministic way. This reads as a critique on both scientific as (bio)ethical approaches that make abstraction from reality and thereby lose touch with ‘concrete’ reality, a reality that Hens argues for Whitehead is ‘truer’ than the abstract. With Van Rensselaer Potters, Hens agrees that bioethics should acknowledge the limits of a scientific practice that focusses primarily on studying mechanisms.
Hens applies these insights to the ascertainment that quantitative research is often considered more scientific and approaches the truth more than qualitative research. Insight into concrete situations however, Hens argues, is as scientific as generalisations based on many data – even though we cannot do without abstractions and generalisations in science. Here, Hens sees a crucial task for the bioethicists and philosophers: “it is crucial to refrain from thinking that these abstractions bring one closer to scientific certainty than looking at concrete phenomena would.” . Hens applies these philosophical considerations to the case of autism, where research has spent much effort, and tremendous amounts of money, into finding the genes for autism. While Hens sees the advantages of conceptualising autism as a genetic disorder fixed in biology in contrast to early psychogenic explanations whereby the behaviour of the mother was to blame, this misconceptualizes the nature of autism in her view. Hens argues that autism is a complex phenomenon that develops over a lifetime and will evolve depending on age and context. The question then arises, what is to be gained from finding the associated ‘autistic gene’. To tackle these problems, longitudinal studies spanning decades are needed according to Hens, where interactions between genes and environments should be covered in intricate models. Environment for Hens refers here, in the spirit of epigenetics, to all that an organism encounters, internally and externally. Research funding however, Hens argues, is in general bound by a definite finality in a certain time span.
The bioethicist must keep on hitting the nail that expressions such as the ‘gene for autism’ are mere abstractions, as after all ‘gene’ is an abstraction of “messy and interconnected nuclear functioning” . Taking further the bioethical route of conceptual analysis, Hens argues that the same goes for ‘autism’ as a concept: it is an abstraction from the actual and diverse experiences of people that receive this diagnosis. In that regard, for Hens the task of bioethicists serving in panels judging research proposals is to safeguard space for concrete case studies and experiences. Overall, Hens argues that any ethical consideration should acknowledge the complex relations between diagnosis and biology. She implores that we look at biology in an open-ended way, whereby, we take in consideration looping effects inherent in such language and paradoxes of labels.
From Whitehead, Hens moves to a discussion of Ilya Prigogine and Isabelle Stengers, in whose work time and the arrow of time are seen as constitutive of reality. In Newtonian high school physics, Hens exemplifies, if we have enough variables we can predict the future and calculate back trajectories. The idea of a predictable future, she argues, is deeply ingrained in our perception of the world. Prigogine and Stengers, however, disagree with this view. They argue that reality is not even in principle stable, but on the contrary unstable and evolving. In their view, the vast majority of reality is governed by fundamental uncertainty. Hens takes this to mean that the future is not a given, but on the contrary a construction. With the introduction of probabilities, chance is introduced as a fundamental characteristic of reality. Choice, Newness and emergence come to be key features of reality, and opportunities that chance encounters give us. For Prigogine and Stengers, creativity is omnipresent and science can no longer be conceived of as the realm of discovering eternal laws. Therefore, Prigogine and Stengers plea for a new alliance between the natural sciences and humanities.
With these insights from Prigogine and Stengers, Hens moves to the concrete example of genome editing to enhance human beings and combines it with the narrative from the science fiction movie GATTACA. In GATTACA, such techniques are used to create a class society that discriminates the un-enhanced human beings. In our reality, the possibility of genome editing has led to debates on policies that should be put in place to mitigate or prevent a possible future of genome edited superhumans. With a focus on the conception of time first introduced via Whitehead, and further elaborated via Prigogine and Stengers, Hens pleads we must let go of technological determinism. Instead of merely thinking about effects of future technologies, we should think about the future we want with the options that are now available to us, with a focus on a liveable future.
Following, Hens introduces us to ethico-onto-epistemology, a conceptualisation of new materialist thinker Karen Barad wherein ethics, epistemology and ontology are deeply entangled. ‘World-making’ hereby becomes a profoundly ethical business in which bioethicists are involved, making ‘agential cuts’ in reality and creating new worlds. Hens connects this line of reasoning with thinkers such as Donna Haraway, Bruno Latour, Nicolas Rose and Ian Hacking who endorse the view that science is involved in such ‘world-making’. The idea of world-making stands in contrast to taking science to be observing reality from the view from nowhere that ‘cuts nature at its joints’. The ethical part of such onto-epistemology, regards the importance of a stance of awareness of which worlds we create through language, which words we use and which ideas we keep alive.
In the last section of part two, Hens further delves into questions of how we should conceive of entanglement with different forms of life. With reference to the work of microbiologist Lynn Margulis, Hens presents a view in which co-operation of organisms is an essential aspect of speciation and life, as much as the idea of survival of the fittest. Zooming in on the working of the cell, Hens questions why for instance proteins have received far less attention from ethicists as genes. Hens further elaborates this point of view through a case description of her work as a post-doctoral researcher on the ethics of new in vitro techniques. Thinking with Margulis, Hens argues, may shift the focus of ethical questioning in such matters.
In part three, Experience, Hens describes conceptualisations of disease from the rich literature of philosophy of medicine and its relation to how we think about ethics in medicine. Hens argues that we should take normativity in account in regards to concepts of disease and pathology, implying that attention should be paid to experiences and situated knowledge. Thereby, she positions an ethical scientific and clinical practice that pays much attention to the inclusions of viewpoints of those who hold a marginalized position in healthcare. This implies that bioethical practice should be intersectional, so Hens argues.
Disability according to Hens often carries the same negative connotation as disease. Here, Hens disagrees with Van Rensselaer Potter for whom pregnancies where abnormalities are found should be terminated. Hens points out that there exists also the possibility for creating a disability-friendly future. This point, elaborated on further, also invites us to ‘stay with the trouble’. It is highly unlikely disability will disappear from concrete reality, she argues further on, while we even might deal with disability later in our lives as well and/or have family members that are or become disabled. Hens states, referring to work of philosopher Elizabeth Barnes, that having a disabled body is in itself a value-neutral thing. This means that even though people suffer from specific disabilities, this does not per definition entail that it is straightforwardly harmful. Hens elaborates on Crip theory through the work of Vanaken, who argues for the inclusion of embodied experiences and asks us to imagine “a world where disability is welcomed as a necessary part of diversity, not merely accommodated.”
Hens familiarizes us with the work of Georges Canguilhem, who carefully considered the entanglements of organisms and milieu. For Canguilhem, the pathological is considered to be a different kind of ‘normal’. A normal state, for Canguilhem, “can no longer function as the checkpoint to see whether something is normal or pathological.” . Hens takes from Canguilhem the concept of ‘biological normativity’, that delineates a normativity in the relation between an environment and its historical context, whereby health is considered to be a margin of tolerance to change. Hens argues that disease judgements also imply making a disease, something not good or bad as such, but morally relevant. A few pages earlier Hens already illustrated this point with the example of long-covid, of which the status as disease was disputed at first and of which she has experience herself. Hens exemplifies both the conceptual discussion regarding the status of disease concepts, as the role of experience and importance of intersectionality.
Following, Hens zooms in on the fascinating case of human enhancement whereby the researcher He Jiankui shocked the world in 2018 with the first genetically altered born babies. Hens uses this case to discuss bioethical discussions surrounding technologies of human enhancement, in relation to ethical theories. This section in depth zooms in on several discussions, between proponents of changing human nature for the better, those who believe it should be left untouched, and views of transhumanists. Going back to Donna Haraway’s cyborg metaphor, Hens shows how Haraway urges the reader to go beyond dualisms of man-woman, nature-culture and nature-technology, arguing that human beings are always hybrid creatures or cyborgs. Relationality, in post humanist thinking, is according to Hens pivotal, which implies that we always stand in relation to humans, other-than-humans and the physical environment. This view, for Hens, fits well with system biology approaches in which what a disease is, is always entangled with the milieu in which an organism lives. What worlds we make is thus for Hens a pivotal task to investigate for the bioethicist.
In the closing section of part three, Hens draws on feminist epistemology to elaborate on epistemic standpoints and epistemic injustices. Objectivism and the ideal of neutrality in science are, following thinkers as Sandra Harding, a problem in science, since they fail to acknowledge the partiality inherent in scientific practice. Hens adds that this does not mean such scientific standpoints are wrong per se, but that they do not cover the whole story. Harding further claims that standpoints of marginalized groups should be included to improve science and make it more complete. Hence, good science is to be conceived for Harding as political and inclusive. Hens argues further on that standpoint epistemology can also function as framework for strong ethical consideration, going back to the case of disability. Hens there delves into matters of hermeneutical injustice, adding case descriptions and examples through her research experiences in different forms. Hens implores the research field to question ableist assumptions and take standpoint theory seriously, arguing that we have to take situated knowledge of those who are disabled seriously. Here, Hens sees another role for the bioethicist, in integrating standpoint epistemology and actively working towards hermeneutic justices.
Hens closes part three with advocating the role of diplomat and idiot for the bioethicist. Bioethicists, Hens argues from Stenger’s work, should ‘slown down’ reasoning and bring to light different awarenesses of problems and situations that are being studied. Borrowing a term from Stengers, this for Hens means bioethicists should be cosmopolitical, helping to bring to light and articulate multiple, divergent worlds. In the role of idiots, Hens argues, the bioethicists asks questions that the ‘more serious’ scientists find annoying. This role serves the purpose to enable different viewpoints, angles and alternative views that are often overlooked or disregarded in research projects. Lastly, bioethicists, following Stengers, can also be diplomats that give voice to marginalized or threatened perspectives, forcing experts to consider these perspectives. Thereby the bioethicist also can serve as a witness for those who cannot or do not want to speak for themselves. This means, for Hens, that the overall task of the bioethicist is to make things more complex rather than simplify questions, resisting science and ethics that ignore such complexities.
In part four, Troubles, Hens takes Harraway’s notion of Staying with the trouble to expand on ideas regarding intersectional and speculative bioethics. There, Hens links environmental and medical ethics and presents care ethics as a moral theory to guide all ethical theories. Thereby, she points to the need for appreciating context sensitivities of specific challenges and for a creative engagement with the humanities. Hens questions if a focus on personalized responsibility, inherent in the growing field of personalized health, is not misguided. She questions this focus as it leads us away from other significant threats to our health, related to climate change and pollution. Hens argues for a forward-looking bioethics, that ‘stays with the trouble’, but focusses on a liveable future filled with value and joy. Staying with the trouble, for Hens, also means acknowledging complex questions regarding the relation between environmental pollution and disability.
Following, Hens introduces us to care ethics and argues that this is not a mere ‘parochial endeavour’, but implies that bioethics should span both the individual and the political and their intertwining. For Hens, care is “a way to think about environmental and health ethics together” , reflecting both a truth underlying human existence as the manner this existence is entangled with the world at large. This means that staying with the trouble entails an engagement with messy realities, with the goal of helping ensure that those who come behind us can still find a life joyful and worth living.
Form Harraway, Hens takes notions such as ‘response-ability’, ‘cultivating collective knowing and doing’, ‘sympoiesis’ (making-with) and argues that in thinking with each other we can weave stories together in moving forward in creating a liveable world. Stories, Hens argues, help us stay with the trouble rather then thought experiments, sterile utopias or dystopias. This implies that we need real-life experiences in combination with speculative fiction, while not trying to rationalize away the messiness of concrete reality. With these tools, Hens argues, the bioethicist can help clinicians and scientists to come up with stories regarding technology and practice they are involved with. Creativity, fed by speculative fiction and real-life experiences, is thus a crucial matter for world making and forward moving.
In the fifth and last part, Bioethics, Hens focusses on the concepts of risk, autism research and animal ethics. Putting to practice the focus on creativity and speculative fiction, she reflects on playing computer games to show how they can invoke relevant ethical considerations. The concept of risk, Hens argues, should constantly be questioned in bioethics. Using case examples, Hens argues that risks are messy and uncontrollable. Although they are hypotheticals that suggest us what might happen, they are to a certain extent incalculable. Importantly, Hens emphasizes, what we choose to see as a risk is not value-free. Using case descriptions, of among others autism, down syndrome and long COVID-19, Hens illustrates these theoretical claims. While Hens does not believe the bioethicist can really solve ethical dilemmas during, for instance, pandemics, she argues that it is possible to point out different aspects of risks and how various risks are incommensurable in relation to each other. The bioethicist, for Hens, should keep showing that we operate in a mode of uncertainty.
Next, Hens comes back to the dynamic and processual view of life she expanded on earlier, arguing that if we accept reality as something we cannot ultimately control, a future with many possibilities opens up. Using the case of autism, Hens argues that more room should be made for non-traditional, longitudinal research that steers away from quick fixes or mechanistic explanations, but tries to understand phenomena in their temporal unfolding over time.
In the closing chapter, Hens takes the work of Val Plumwood to revisualize our human perspective as being fundamentally part of the ecosystem. With Plumwood, Hens argues for a morality and ethics that recognizes commonalities, such as compassion and individual rules, between the human and the other-than-human world. With this perspective, Hens shifts to the concrete reality of animals used in research studies. The role for the bioethicist Hens sees here, is to keep showing that there is no black-and-white view of morality while also showing the impossibility of simultaneously holding at least seemingly conflicting views, such as ‘animal experiments save children’s lives’ and ‘we should care for animal lives’. The book ends with an epilogue, where Hens both critically evaluates the work of Van Rensselaer Potter, as argues for what the field of bioethics has to gain in light of contemporary troubles.
This book excels in practicing what it preaches: it moves creatively between science, theoretical philosophy and philosophy of science, speculative ideas, fiction and analytical bioethical case descriptions, using her research experiences as personal experience. The critiques she delivers on entrenched scientific assumptions and the relation between quantitative and qualitative research, on technology and developments, and so on, are nuanced and to the point. By giving us numerous bioethical case descriptions, this book gives the reader a clear view of what bioethics is all about. Hens takes things a step forward with an emphasis on a liveable and enjoyable future, and a view on what bioethics ought to be about – staying with the trouble.
Rob Sips, filosoof en onderzoeker
Kristien Hens. Chance Encounters - A Bioethics for a Damaged Planet. Released in 2022. Available here.