12. Standpoints
© 2022 Kristien Hens, CC BY-NC-ND 4.0 https://doi.org/10.11647/OBP.0320.12
In Part Two, I described a view on life that is fundamentally relational, situated in time. In the previous paragraphs, I argued for a perspective on disease relative to the environment. However, this does not mean that this is a one-way influence. Relationality is bidirectional. According to Canguilhem, health is as much about how the world shapes organisms as about the extent to which they can shape the world. However, such a relational view of knowledge and the world is also relevant to how we think about science and ethics. It means that there is no ‘God Trick’, in the words of Donna Haraway (Haraway, 1988). We cannot assume the position of an omniscient god when we do science, as all knowledge is situated. This does not mean that there is no such thing as objective science. It is easy to fall back to either relativism and think there can be no objective knowledge or positivism and even scientism: a denial that science is situated and that different standpoints yield different aspects of knowledge. Regarding ethical knowledge, we can find adherents to both extreme positions. Moral norms can be seen as either absolute or relative. They are considered universal and applicable everywhere or seen as relative to specific cultures and times. Bioethics has long acknowledged the importance of not only starting from general moral theories or principles but incorporating particular norms and values and situated knowledge in ethical decision-making. I contend it is an essential task of the bioethicist to ensure that situatedness is taken into account on all levels, in the science we are dealing with and in the ethical reflection about the science. Such an approach implies that ethicists and philosophers, together with other humanities and social sciences scholars, can take an essential role in life-sciences research to enable such an approach. At the same time, we also need a framework to argue for incorporating different standpoints in research. More and more, funding agencies are requesting that research proposals, especially when of a clinical research kind, also describe how stakeholders will be engaged. In clinical research, especially, this has taken the form of advisory boards that consist of patient representatives and other stakeholders, such as parents and friends of patients. However, sometimes researchers consider the engagement of stakeholders as a tick-box exercise at best or as something that seriously hampers their research efforts at worst. Indeed, for more fundamental research into disease mechanisms, there is the fear that the requirement of patient engagement will ultimately divest from necessary basic research. I believe it is possible to argue for incorporating different standpoints in fundamental research in the life sciences. Such incorporation implies the acknowledgement that it is about the practical implications of research for patients and about having access to new ways of seeing realities, which are fundamentally situated. In what follows, I will draw from the rich corpus of theory that feminist epistemologists and ethicists have approached, formed, and incorporated in their many contributions to the International Journal of Feminist Approaches to Bioethics (IJFAB: International Journal of Feminist Approaches to Bioethics, no date). However, this corpus rarely found its way into mainstream bioethics, which often takes the ideal of neutral, ‘view from nowhere’ science for granted.
Epistemic Standpoints and Epistemic (In)Justices
It seems straightforward that patients are involved in developing applications based on clinical knowledge. After all, they are the ones who will be using them. To what extent people consider engaging stakeholders and querying different standpoints beneficial to the underlying science is unclear. Science is often thought to be neutral: only the scientific method will ensure that we find objective knowledge. Bothering the public will only lead to delays and worse science. However, since the nineties, feminist epistemologists have argued that to arrive at genuine or strong objectivity in science, it is necessary to include the standpoints of those belonging to marginalized groups. One of the champions of this feminist standpoint epistemology is Sandra Harding. She argues that the ideal of neutrality in science is not a solution that helps avoid political values getting entangled with scientific knowledge. Instead, neutrality, or objectivism, is the problem:
Objectivism defends and legitimizes the institutions and practices through which the distortions and their often-exploitative consequences are generated. It certifies as value-neutral, normal, natural, and therefore not political at all the policies and practices through which powerful groups can gain the information and explanation that they need to advance their priorities. (Harding, 1995, p. 337)
Such ‘weak objectivity’ does not acknowledge science’s partiality. Indeed, by assuming that the predominant scientific practice is the neutral and objective one, we forget that this science is done chiefly from the standpoint of the white male scientist or philosopher. It is androcentric. Harding writes: ‘The Archimedean observer of good science is the impartial administrator of liberal political theory and the disinterested moral philosopher — the “good man” — of liberal ethics’ (Harding, 1991, p. 58).
Of course, that does not mean this standpoint is wrong per se. It is just not the whole story. Think about the emphasis on competition in contemporary evolutionary theory and on the idea of genes that do everything to propagate subsequent generations. We have seen in Part Two that different approaches to life are possible—approaches that stress cooperation, chance and, as we shall see in Part Four, Care. Nevertheless, to perceive such complementary approaches to evolution, science must incorporate the standpoints of those not part of the dominant discourse. Harding’s strong claim is that including the standpoints of marginalized groups, which are not typically associated with scientific practice, makes science better and more complete. It is not just nice to have:
The history of science shows that research directed by maximally liberatory social interests and values tends to be better equipped to identify partial claims and distorting assumptions, even though the credibility of the scientists who do it may not be enhanced during the short run. After all, antiliberatory interests and values are invested in the natural inferiority of just the groups of humans who, if given realm equal access (not just the formally equal access that is liberalism’s goal) to public voice, would most strongly contest claims about their purported natural inferiority. Antiliberatory interests and values silence and destroy the most likely sources of evidence against their own claims. That is what makes them rational for elites. (Harding, 1991, pp. 148–149)
Hence, Harding strongly argues that good science is always political because it is inclusive. It acknowledges that science is done from a specific cultural perspective, which can be wrong and biased. Including as many standpoints as possible helps objectivity and helps to unmask shared assumptions underlying knowledge.
The task of bioethics is to ensure that both fundamental and practical science is the best we can get. This means that advocating for the inclusion of different standpoints and visions is part and parcel of our job descriptions. It also means acknowledging that the distinction between ‘pure’ and applied sciences or technology is not as straightforward as commonly assumed. Fundamental science is already related to the application of science. It is not necessary to pinpoint a specific application when discovering certain fundamental truths to acknowledge that the discovery will, most of the time, have implications, although we may not be able to predict them. Moreover, as Sandra Harding has argued, standpoints and values play a role at the point of discovery. They influence what we conceive of as valid objects of investigation and what we conceive of as scientific. Consider the example of inductive risk, the chance that one will be wrong in accepting (or rejecting) a scientific hypothesis. Heather Douglas has argued convincingly that choosing what seems to be very technical statistical data, such as thresholds for significance, is value-laden (Douglas, 2000). Douglas gives the example of tests for toxicity levels in animals. The decision of what is statistically significant in delimiting toxic from non-toxic levels is not merely a scientific one: Non-epistemic values play a role in determining what is significant and what is not. Indeed, false positives will lead to policies that are excessively protective about which levels are acceptable. Ultimately such policies are more protective of public health risks. However, if the significance is set to tolerate more false negatives, the level that is considered safe is higher than it should be. Such a policy is less protective of public health. Still, it may be better for cost-effectiveness for the industry, which may value the fact that higher acceptable levels will enable more extensive use of the specific product. It is thus a mistake to assume that non-epistemic values do not play a role in science (Douglas, 2000).
Standpoint epistemology is not only relevant to exact sciences or applied sciences. It can also function as a framework for strong ethical argumentation. Disability is a case in point. Ethicists have often taken for granted the association of disability with lesser well-being. From this starting point, bioethicists have discussed questions surrounding the termination of pregnancy, embryo selection and embryo editing. Even those ethicists who have argued against such technologies have often used arguments related to the sanctity of life or the riskiness of the procedures while not questioning the assumption of diminished well-being. In her paper Epistemic Oppression and Ableism in Bioethics, Christine Wieseler states, ‘Philosophers of disability have argued that disabled people face, due to ableism, testimonial and hermeneutical injustice — two forms of epistemic injustice — within the discourse of bioethics as well as within the practice of medicine’ (Wieseler, 2020). Indeed, testimonial injustice, as described by Miranda Fricker in her book Epistemic Injustice, is the injustice that specific knowers are subjected to when they are ignored in their capacity as knowers because of certain stereotypes that prevail about such knowers (Fricker, 2009). A case in point is some autism researchers’ reluctance to take testimonials of autistic people about empathy seriously because they would lack sufficient insight into their own emotions. This is a missed opportunity for autism researchers and a form of injustice. Hermeneutical injustice is the injustice suffered by those who think their experiences are not shared by others. Therefore, they consider their own experiences as idiosyncratic and not worthy of broader attention. This may happen, for example, if the words are lacking to describe specific experiences. Fricker gives the example of a woman in the fifties of the twentieth century who suffers from sexual harassment in the workplace. Given that these experiences were not often shared at that time, she may feel that she is alone, that this is normal or that she has no recourse.
Wieseler adds several other types of epistemic oppression, wilful hermeneutical ignorance, epistemic exploitation, and epistemic imperialism, that should pause bioethicists. Wilful hermeneutical ignorance is a term first described by Gaile Polhaus. It represents cases where marginalized groups explicitly make sense of their experiences but are ignored. It is the ‘refusal of dominantly situated knowers to allow a warranted revision to shared hermeneutical resources’ (Wieseler, 2020). For example, I remember a reproductive ethics discussion with a clinician on the termination of pregnancy in the case of a disability. The clinician considered the fact that parents of disabled children often state that they cherish their lives with their children and are happy as a form of cognitive dissonance. Disregarding disabled people’s testimonials about their well-being for the same reason is also a form of wilful hermeneutical ignorance. It is a form of epistemic oppression or exclusion. Even if marginalized groups are asked to share their experience for science and policymakers to benefit from, this often takes the form of epistemic exploitation. People are asked to spend time and energy contributing to research endeavours without payment or being recognized as possessing equally important knowledge. It is still up to the researchers to decide which parts of the shared knowledge they will use. They sometimes do not revise their underlying assumptions even after correction by those with experiential knowledge. It is an experience that many autistic people have had when contributing to research. They are invited to join advisory boards in autism research projects to give feedback. In the end, the research continues with the same premises and goals as before, without taking the input from the autistic community seriously. Hence, epistemic exploitation legitimises the epistemic agency of dominantly situated knowers. It is a form of window dressing.
Epistemic oppression causes rifts between scientists and the subjects they are studying and is a huge missed opportunity for developing scientific practices that are theoretically sound and that matter. It can be a requirement of the job of the bioethicist to ensure that clinical research projects engage those with unique knowledge and experience from the moment a project proposal is written. We should also advocate for more acknowledgement of the time and effort spent and urge funding agencies to set aside money for the engagement of different stakeholders. Wieseler also describes epistemic imperialism, another phenomenon that entrenches the epistemic agency of dominantly situated knowers. It refers to forcing the dominant belief systems on oppressed groups by suggesting that these systems are value-free or ‘just the way it is’. Such imperialism needs not to be intentional. Even practices of inclusion may be imperialist. Wieseler states that ‘bioethicists purport to make objective epistemic claims that are actually informed by ableist hermeneutical resources’ (Wieseler, 2020). We may be as inclusive as we like: If we do not question our ableist take on issues relating to well-being and quality of life, this is still a form of epistemic imperialism. The opposite is true: non-disabled bioethicists are disadvantaged in knowing about disability and quality of life. If, for instance, the dominant position in reproductive ethics is the assumption that a disabled person’s life will be worse or less joyful than the life of a non-disabled person, it would effectively underlie discussions over who gets to live. Therefore not questioning one’s prejudices has far-reaching repercussions.
I think we can learn from standpoint theory that we must take the situated knowledge of those who are disabled seriously. This will yield different philosophical and ethical knowledge, improving the stance we often take for granted. It is, moreover, also a question of justice. I believe that bioethics, bearing in mind what is at stake in the conclusions we draw, should engage actively with the literature on epistemic standpoints and injustice and urge researchers, research consortia and research funders to take these ideas seriously. That does not mean that striving for epistemic justice and engaging situated knowledge is not without its challenges. In some respects, standpoint epistemology is still somewhat intellectualistic. It is not merely using empirical research methods such as surveys and qualitative research to discover other people’s experiences, values, and norms. There is no guarantee that participants of marginalized groups do not reproduce the dominant discourse. Therefore, an approach based on the insights from standpoint epistemology should be more than a representation of opinions. It is actively thinking about the situatedness of your knowledge. Thus, it is quite demanding from the groups whose views it tries to incorporate. Nevertheless, if we take the idea of situated knowledge seriously, it means that the knowledge of those who typically are not represented should be considered. Even more so than physical disability, there is a dearth of knowledge about the experiences of those who do not have a voice, either because they do not communicate with oral speech, like some autistic people, or because they have an intellectual disability that prevents them from participating in a specific discourse. I believe that also here, the bioethicist can play a role.
The Role of the Bioethicist: Diplomats and Idiots
In March 2020, I got COVID-19. Although I considered it mild at the time, as I did not end up in the hospital, I had cognitive issues and extreme tiredness for months afterwards. Even upon writing these words, my pre-pandemic energy levels are still not back, and neither is my sense of smell fully restored. Such is life. However, in the months after that first wave, many people started to have similar experiences, sometimes far more debilitating than mine. The phenomenon became known as long COVID-19 and has been considered an actual phenomenon, an actual disease, despite initial hesitance to take these symptoms seriously as more than post-infection fatigue or pandemic anxiety. This recognition came about thanks to the patient organizations that arose in the aftermath of the first couple of waves. Although I was, and am still, very reluctant to talk about my health situation, I did talk a bit about long COVID-19, and I became known as someone with the symptoms.
At the same time, I am also a professor, an academic bioethicist. Because of that double role, I was invited to talk about my symptoms at a symposium by and for medical professionals. I was in the grey zone, being both someone with experience and an academic. The organizers were reluctant to invite representatives of patient organizations, presumably because they wanted to hear what they considered a more ‘neutral’ voice. My academic credits gave me an entrance ticket. This experience gave me pause: after all, I was there to talk about my experiences, not about my academic work. On the one hand, I thought it was self-evident that a patient representative has relevant experience. Their experience may be less tainted with conceptual and ethical flutter. On the other hand, maybe I was in a position to argue for the stakeholder precisely because of my specific situation, having a double identity as a patient and as a bioethicist. I had credibility in both ways. I have advocated for incorporating the autistic experience in autism research and have gained some credibility among autism researchers. However, I do not have a diagnosis of autism myself, making me an outsider both among autism researchers and autistic people. At the same time, it seems unfair that all the burden of giving credibility to experiences should go to those with the experiences. Autistic researchers, for one, sometimes just want to be seen as researchers, not as spokespersons. I believe that there is an essential role for the bioethicist to play. As intermediaries between research and experience, we can make medicine more just and truthful, which are not necessarily separate endeavours. During the long COVID-19 symposium, some clinicians were reluctant to accept the phenomena described by patients as accurate. A neurologist stressed that neurological and psychological tests are needed to objectify the long COVID-19 experiences. They may have had a point that it is essential to link experiences to what we know already. However, we may miss important information if this is used to add credibility to experiences. Existing ‘objective’ tests can only investigate what is already known. In the case of long COVID-19, some of the cognitive symptoms that people describe are new and hard to catch in tests, such as the sudden loss of words to describe familiar things. Unless we take people’s accounts for granted, we may never find ‘objective’ ways to test this. In what follows, I want to think about the bioethicist’s role in clinical research some more. Specifically, I will argue that it is also our task to function as diplomats, in the words of Isabelle Stengers (Stengers, 2005). We are at home in the grey zone between science and the people experiencing what is researched. Especially in cases where people are reluctant or unable to convey their messages, we have to find ways to step in.
The role of bioethicists has been described as ‘the handmaidens of medicine’. Bioethicists working with scientists on extensive research projects are often engaged to ‘do’ the obligatory ethics part. Mainly such work includes dealing with consent forms and interviewing stakeholders and the general public about their opinions regarding the matter. They are often asked to participate in the final weeks before the project’s deadline. In the first part of this book, I argued that the role of philosophers and ethicists is at the heart of a research project, from the beginning to the end, querying implications and helping researchers get the concepts and aims of a project right. In other words, as they are trained to analyse ideas, assumptions, and implications, ethicists are best suited to be ‘benevolent gadflies’ in different types of research. However, being an ethicist on a research project also entails ensuring that the voices and interests of those directly affected by the project are heard. This is especially true if they are unable to raise their voices themselves. Isabelle Stengers’s idea of the diplomat, as she describes it in her article The cosmopolitical proposal, can inspire this position (Stengers, 2005). In this paper, she urges us to ‘“slow down” reasoning and create an opportunity to arouse a slightly different awareness of the problems and the situations mobilizing us’. She uses the word cosmopolitical and not cosmopolitan on purpose. For her, it is not about attaining a final world order we would consider ‘good’ for everyone, as in Kant’s idea of citizenship. Instead, for her, cosmos refers to ‘the unknown constituted by these multiple, divergent worlds, and to the articulations of which they could eventually be capable, as opposed to the temptations of a peace intended to be final, ecumenical’.
Particularly inspiring is Stengers’ reference to Deleuze’s idiot, a concept that Deleuze himself borrowed from Fyodor Dostoevsky. This idiot ‘is the one who always slows the others down, who resists the consensual way in which the situation is presented and in which emergencies mobilize thought or actions’. As bioethicists, we can be such idiots operating in the grey zone. I confess that I have also played the idiot’s role in autism research projects, asking questions that annoy more serious scientists. Such questions included: What does it mean that your project will help autistic children? What does helping autistic children mean? What does autistic mean? And so on. I do not think I am an annoying person per se, but I believe that such interventions enable different viewpoints, angles, and alternative views. Maybe such a task is at the heart of the role of the bioethicist or the philosopher of science, to take nothing for granted, to sow seeds of hesitation or potentially new ways of approaching phenomena. I would thus argue that bioethicists be such idiots.
Besides idiots, we can also be diplomats. The role of the diplomat is, according to Stengers,
to give a voice to those who define themselves as threatened, in a way likely to cause the experts to have second thoughts, and to force them to think about the possibility that their favourite course of action may be an act of war. (Stengers, 2005)
For those who cannot or do not want to speak for themselves,
witnesses can make them present, conveying what it may feel like to be threatened by an issue that one has nothing to contribute to.
If we want to take the ethics of bioethics seriously, we must take up that role, which is partly a political role. It means looking out for those who fall outside a utilitarian calculus, for those who are considered expendable. Bioethics has sometimes fallen into the trap of aiming for the ‘utopian’ vision of science and politics that Stengers describes and resists. An example that immediately springs to mind is the thought experiment used in reproductive genetics. It asks us to imagine a future where you have to fill out, on paper, the characteristics that your future child would have. The argument goes that we will end up in a society without disabilities. Although many bioethicists would grant that disabled people often do live a worthwhile and happy life, the idea is that all things considered, a society without disabilities is better than one with disability. In that respect, there are no real arguments against not wishing for disability. However, as we will see in Part Four, such utopian projects are misguided, as they try to abstract from the messiness of the world, from the fact that there are many divergent worlds that all have a claim to what is well-being—the good life—one no less valid than the other. There is no answer to whether a world without disability is better than a world with disability: the question itself is nonsensical. There is no vantage point on which we could stand and from which we can apply our general principle of a good life, separate from the diverse people that live their lives. Instead, a more helpful role for ethicists is that of a witness for those who are not heard or the diplomat for those whose interests or experiences tend to be neglected. Stengers states that:
As for the cosmopolitical perspective, its question is twofold. How to design the political scene in a way that actively protects it from the fiction that ‘humans of good will decide in the name of the general interests’? How to turn the virus or the river into a cause for thinking? But also how to design it in such a way that collective thinking has to proceed in the presence of ‘those who would otherwise be likely to be disqualified as having idiotically nothing to propose, hindering the emergent’ common account. (Stengers, 2005)
I believe that the bioethicist can play various roles here, for example, as part of a consortium on vaccination strategies during pandemics. Alternatively, as part of an evaluation panel deciding on project funding for research that aims to ‘treat’ autism. Or perhaps as part of a working group devising new strategies to tackle biodiversity loss. Our task is to make things more complex rather than strip questions of their complexity and to resist science and ethics that neglect complexity.