In which I investigate concepts of disease and the importance of experience
Life is Experience
– Georges Canguilhem (Canguilhem, 2008)
In Part One, I argued that it is part of the task of the bioethicist to team up with philosophers of science and question scientific concepts and assumptions that structure both scientific and bioethical thinking. I used the dichotomy between nature and nurture and the reductionist vision of life as programmed in genes as examples of such assumptions. I suggested a developmental way of looking at organisms, including human beings. Such a dynamic and developmental approach also sheds new light on old discussions surrounding the ethics of genetics. In Part Two, I sketched an ontology for the bioethics of the twenty-first century. Imminent catastrophes, such as climate change, and ongoing ones, such as the pandemic, force us to rethink humanity’s position regarding the environment. A purely anthropocentric approach is insufficient in situations where humankind’s survival depends on forces beyond our control. That does not mean that defeatism is all that is left. A process ontology firmly positions us with other organisms and things but also suggests that there is room for creativity.
Creativity is at the heart of the universe. Human beings are no longer the masters of a world they can manipulate to shape the future. Neither are they merely victims of forces beyond their control. Human beings can work with the world to create a liveable future. Bioethics that inscribes itself in such a process account comes close to what Potter imagined in his first book Bioethics, a Bridge to the Future (Potter, 1971). I suggest that endorsing process ontology, because it asserts the situatedness of knowledge, implies endorsing the importance of experiences, a step Potter does not explicitly take. At the same time, bioethics has become firmly associated with biomedical ethics and clinical practice. This association presupposes that bioethics is also an ethics of the personal choices patients and clinicians make in specific cases. In Part Three, we discuss diseases and disabilities to pave the way for an approach that imagines the private sphere of medical ethics and the public sphere of environmental ethics together, a step we shall take in Part Four.
10. Medical Ethics and Environmental Ethics
© 2022 Kristien Hens, CC BY-NC-ND 4.0 https://doi.org/10.11647/OBP.0320.10
In his first book, Van Rensselaer Potter imagined bioethics as a biology-based discipline that would help the survival of humanity. In his 1988 book, Global Bioethics, he concedes that in the years since writing Bioethics, Bridge to the Future, the term bioethics has come to mean something different (Potter, 1971; Potter, 1988). Indeed, in the seventies and eighties, bioethics was, he explains, being developed as an outgrowth of medical ethics at Georgetown University and the Hastings Institute. Indeed, until today, bioethics is still associated primarily with questions surrounding the ethics of reproduction, euthanasia, advance directives, informed consent, and privacy issues related to genetic research and the like. Environmental ethics is not automatically associated with bioethics, although many bioethics syllabi have an entry on environmental ethics. However, questions about biotechnology and animals for research already call for an interaction between medical ethics and environmental ethics.
Bioethics is a discipline that primarily studies practices and developments in the biomedical field. The type of bioethics that Potter envisaged in his 1971 book never made it to the mainstream. He writes:
Medical bioethics and ecological bioethics are non-overlapping in the sense that medical bioethics is chiefly concerned with short-term views: the options open to individuals and their physicians in their attempts to prolong life through the use of organ transplants, artificial organs, experimental chemotherapy, and all the newer developments in the field of medicine. Ecological bioethics clearly has a long-term view that is concerned with what we must do to preserve the ecosystem in a form that is compatible with the continued existence of the human species. (Potter, 1988).
In both books, Potter believes the primary goal of bioethics must be the survival of humankind. Such survival means, for him, that there should be population control. Indeed, Potter, in his two books, considered the question of overpopulation as maybe the most pressing issue of his (ecological) ethics. This idea seems far removed from medical ethics, specifically its subdiscipline, reproductive ethics. In reproductive ethics, the right of people to reproduce is seldomly questioned. Perhaps we have been too myopic in avoiding such questions. When teaching students about reproductive ethics, I sometimes ask them about the ethical issues related to new reproductive technologies. When I have them reflect on topics such as gene editing of human embryos, their standard answers relate to designer babies or the right of parents to choose their type of child. Some students, particularly from the biology curriculum, would, from time to time, mention the question of overpopulation: they would question the idea that we should invest in technologies that would create even more people. Bioethicists should not shy away from difficult questions regarding the assumptions we take for granted, such as the right of people to reproduce and have as many children as they want. At the same time, we must also consider the plight of those who cannot reproduce naturally but wish to have children. Potter is naïve in his assumption that fighting overpopulation is the primary way to solve the world’s problems. To his credit, he does not suggest population control should be forced upon people: It should be accomplished through education around birth control, provision of contraception, fighting poverty, and ensuring women receive a good standard of education after the age of 11. At the same time, he sometimes is ableist when discussing abortion and the management of pre-term newborns. I shall come back to that later.
Nevertheless, making more people, an aim of reproductive medicine, is an excellent example of how medical bioethics and environmental ethics sometimes speak different languages. Principles such as reproductive autonomy or even procreative beneficence and references to individual rights and responsibilities seem incompatible with global goals. However, back in 1988, Potter acknowledged that medical and environmental issues should not be considered separately: ‘The time has come to recognize that we can no longer examine medical options without considering ecological science and the larger problems of society on a global scale’ (1988, Global Bioethics) (Potter, 1988). Since the beginning of 2020, humanity has faced a global challenge in the form of a pandemic. The quote from Potter seems visionary. That health and environment are intrinsically linked seems a truism, but one that we may have neglected. The origins of pandemics have been linked with biodiversity loss (Jones et al., 2008; Dobson et al., 2020). Infectious respiratory diseases are probably worse for those suffering from respiratory problems due to pollution (Pozzer et al., 2020). In his book Wounded Planet, Henk ten Have also recognizes the urgency of Potter’s legacy, as health and environment can no longer be seen as separate spheres:
Climate change, toxic waste, air pollution, ozone depletion, extreme weather events, and loss of biodiversity have had significant impacts on health and healthcare. Deforestation and destruction of habitat are associated with the emergence of new viral diseases such as Ebola or Zika. Focusing on care, treatment, or vaccination of individual patients can thus not be disconnected from the wider environmental context in the management of epidemics. (ten Have, 2019, p. 2)
Furthermore, the sphere of the biomedical is no longer completely private in a pandemic: who gets access to vaccines and treatment is a question of global justice. My ambition is not to solve the seeming incompatibility of medical ethics, public health, and environmental justice. The balancing act of thinking of the two together is at the heart of what it means to practice bioethics. In what follows, I shall explore what this could imply using some of the ideas discussed in Parts One and Two. I shall first revisit the philosophical discussion about concepts of disease and the enhancement debate, which has been at the core of many bioethics discussions. I shall briefly describe the ideas of Georges Canguilhem as a philosopher who fits the idea of a situated and developmental approach to medicine. With Canguilhem, I will explore the importance of standpoints and individual experiences. In Part Four, I suggest an approach to bioethics that covers both private relations and public responsibilities.
1 Series of experiments for enhanced microtuning, awakening and practicing sensorial empathies, in this case using entoptic vision: learning to see pathogenic microbes in the sapiens bloodstream without a microscope. Inspired by Giraldo Herrera, Microbes and other Shamanic Beings (Cham: Palgrave Macmillan, 2018).