Kristien Hens

This paper proposes using the term “Bioethics-in-Science” (BiS) to denote and delineate a set of emerging methodological approaches entangling bioethical inquiry directly within scientific practice. Drawing inspiration from Van Rensselaer Potter’s original vision of bioethics as a collaborative bridge between biology and ethics, BiS represents a community of practice aiming to contribute to bioethical inquiry in three key ways. First, it reframes the relationship between ethics and science by treating scientific practice as inherently value-laden and recognizing scientists’ relevant ethical expertise. Second, it develops methods—including ethics notebooks, collaborative workshops, and conceptual mapping—which facilitate a shift from mere external evaluation towards continuous ethical deliberation within research environments. Third, it demonstrates how bioethical inquiry can actively contribute to improving scientific practice through the co-creation of knowledge and values. Through case studies from synthetic biology, neurodiversity research, and proteomics, we illustrate how BiS arose from and operates in practice, and examine the challenges of crossing disciplinary boundaries. As such, we position BiS as offering a pathway for bioethical inquiry to move beyond its peripheral position vis-à-vis the sciences and engage meaningfully with the normative dimensions of scientific knowledge production instead, ultimately contributing to both better ethics and science.

In this rigorous and necessary book, Kristien Hens brings together bioethics and the philosophy of biology to argue that it is ethically necessary for scientific research to include a place for the philosopher. As well as ethical, their role is conceptual: they can improve the quality and coherence of scientific research by ensuring that particular concepts are used consistently and thoughtfully across interdisciplinary projects. Hens argues that chance and uncertainty play a central part in bioethics, but that these qualities can be in tension with the attempt to establish a given theory as scientific knowledge: in describing organisms and practices, in a sense we create the world. Hens contends that this is necessarily an ethical activity. Examining genetic research, biomedical ethics, autism research and the concept of risk, Hens illustrates that there is no 'universal' or 'neutral' state of scientific and clinical knowledge, and that attending to the situatedness of individual experience is essential to understand the world around us, to know its (and our) limitations, and to forge an ethical future. Chance Encounters is aimed at a broad audience of researchers in bioethics, philosophy, anthropology, sociology, as well as biomedical and environmental scientists. It will also be relevant to policymakers, and the artwork by Christina Stadlbauer and Bartaku will be of interest to artists and writers working at the intersection of art and science.

Proteomics research and testing are becoming increasingly relevant for biomedical and clinical contexts. This is partly due to technological advancements and the increasing recognition of the functional information that proteomics may add to existing biomedical knowledge. However, in contrast with human genomics, human proteomics has been largely ignored as a field of study by the bioethics field. This article presents a scoping review of the literature on the ethics of human proteomics, employing a two-stage analysis of included publications. In the first stage, we identified the topics discussed in these publications as ethically relevant. In the second stage, these topics were structured into common narratives through thematic analysis. This approach provides an overview of both the content and the structure of scholarly discussions on the ethics of human proteomics. In the 37 included publications, we identified 22 ethical topics of discussion and structured them in 6 common narratives: (1) ethics of proteomics requires multidisciplinary attention, (2) aspirational benefits of (open) proteomics, (3) protection of individuals, (4) balancing the benefits/individual protections trade-off, (5) resources and equity in proteomics, and (6) dimensions beyond the proteomics experiment). Our main finding is the identification of a perceived link between aspired societal benefits and openly available proteomic data, on the one hand, and between the protections afforded to individual participants or data subjects and the limitations of proteomic data availability, on the other hand. We argue that these assumptions inform an unhelpful trade-off narrative between realizing aspired societal benefits and protecting individual research subjects. Our analysis highlights six common narratives in the current literature on ethics in proteomics. Specifically, we show how unquestioned assumptions and a superficial use of concepts have pushed ethics discussions in proteomics towards counterproductive trade-off narratives. To address these pitfalls, we support existing calls in the literature for closer engagement between the proteomics community and scholars working on ethics, philosophy, law, and social sciences.

We explore how the conceptual framework of Tanaka Shōzō’s theories of nagare (flow) and doku (poison) can be used as a lens to analyze systemic toxicity in Academia. We argue that thinking with Tanaka’s framework has the advantage of empowering individuals to take action and instill hope, while also emphasizing the systemic nature of academic toxicity. Tanaka, a 19th-century Japanese politician and environmentalist, developed his ideas in response to industrial pollution from the Ashio copper mine. He emphasized the interconnection between ecological, social, and political dynamics. We argue that his framework provides a perspective for understanding the entrenched issues in Academia, including exploitative labor conditions, toxic leadership, and structural failures in knowledge production. Through two key case studies – academic publishing pressures (“publish or perish”) and problematic conceptions of excellence in research funding – we illustrate how Academia functions as a doku system, sustaining unhealthy flows that undermine both individual well-being and the pursuit of knowledge. Drawing on Tanaka’s insights, we propose a shift towards nagare, advocating for cooperative, ethical, and sustainable academic practices that enable a healthier research ecosystem.

Thinking with the River: The Environmental Philosophy of Tanaka Shōzō This article explores the environmental philosophy of Tanaka Shōzō, a pioneering Japanese environmentalist during the Meiji era (1868-1912). Tanaka’s response to the ecological and social devastation caused by the Ashio copper mine offers a unique perspective on the relationship between humanity, nature, and technology. His philosophy, especially his ideas on nagare (flow) and doku (poison) emphasizes the interconnectedness of ecological and social systems. I argue that it can offer an alternative to dualistic approaches to nature and is a fruitful addition to contemporary environmental ethics and biotechnology. Specifically, I suggest that Tanaka’s emphasis on an intimate understanding of and collaborative engagement with natural systems can inspire a more reflective and sustainable approach to science and biotech.

Purpose: There is a widespread recognition that biomedical explanations offer benefits to those diagnosed with a mental disorder. Recent research points out that such explanations may nevertheless have stigmatizing effects. In this study, this ‘mixed blessing’ [2] account of biomedical explanations is investigated in a case of philosophical interest: Tourette Syndrome. Method: We conducted a vignette survey with 221 participants in which we first assessed quantitative attributions of blame as well as the desire for social distance for behavior associated with Tourette Syndrome. Results: In our study, it is confirmed that in the case of biomedical explanations, less blame is attributed than in the case of psychosocial explanations. When presented with a mixed (or an epigenetic) explanation stressing an entanglement of biological and psychosocial factors this did not increase blame attribution. The desire for social distance is unaffected by the type of explanation but the participants’ free text feedback indicates this might obfuscate an underlying dilemma between stigma and blame revealed in recent research. Conclusion: There seems to be potential for blame reduction in explanations where biological and psychosocial factors are entangled. However, dynamic, ‘epigenetic’, explanations require further qualitative research to be performed as well as a philosophical framework to account for the ‘mixed blessings’ account.

In this commentary, I reflect on some of the issues raised by the authors of Chapter 5 this volume. Specifically, I address the opportunities and difficulties of enabling co-creation in a large biomedical consortium, R2D2-MH. In R2D2-MH, overall, researchers are convinced of the fact that co-creation of fundamental biomedical research with people with lived experiences is indispensable if we want such research to be meaningful and ethical. At the same time, there is still much work to be done with regard to the conditions under which such co-creation should be done. This implies a rethinking of how science and science funding is done, and of what it means to truly participate in research.

Today, more people are diagnosed with a psychiatric condition than ever before. Classifying a certain type of behavior or a pattern of ‘otherness’ under a specific diagnostic label has as a result that the classification itself shifts and expands, and also alters how people view themselves. This is what Ian Hacking called ‘the looping effect’. With regard to autism, the vast majority of research up until now has focused on finding biological explanations for the phenomenon. It is far less known, however, what it means to live with such a diagnosis. A diagnosis has potentially a large impact on how people reflect on their own identity, and on their relations with others in a professional or familial environment. For our research, we have interviewed 22 adults with a diagnosis of autism, in order to try to understand how people experience and evaluate themselves while having a diagnosis, how they experienced the diagnostic process itself and how this diagnosis helps them to overcome problems in their daily lives. How do they cope with the difficulties they experience in their relations, their work, and more in general, how do they participate in society? How do they perceive themselves as being different from or the same as others? Are there differences in how they cope with this ‘otherness’ before and after being diagnosed? Do they benefit from being diagnosed, and how do they combine this with potential disadvantages? In this chapter, we discuss the issue of otherness and classification, using themes and quotes from the interview study.

Beliefs about the moral status of children have changed significantly in recent decades in the Western world. At the same time, knowledge about likely consequences for children of individual, parental, and societal choices has grown, as has the array of choices that (prospective) parents may have at their disposal. The intersection between these beliefs, this new knowledge, and these new choices has created a minefield of expectations from parents and a seemingly ever-expanding responsibility towards their children. Some of these new challenges have resulted from progress in genetics and neuroscience. It is these challenges that we focus on in this introduction and volume.

Epigenetics is a discipline that aims to demonstrate how environmental factors influence organisms on a molecular level by explaining how these factors can affect the expression of genes. Epigenetic changes are assumed to be heritable and reversible, thus challenging the central dogma of genetics. This dogma states that genes are transcribed and translated unidirectionally to proteins and the genetic code cannot be changed through environmental influences. In addition, in neurology it is believed that epigenetics partly explains the development of neurological conditions and plays an important role in synaptic plasticity. As many epigenetic changes happen in utero, maternal behaviour may affect brain development. This raises questions regarding the responsibility of the pregnant woman. In this chapter, I investigate first whether and how epigenetics complicates the question of maternal responsibility, if even behaviour of years before conception may have consequences for the wellbeing of the future child. To what extent is it an individual responsibility or a collective one? Second, by using the examples of autism and high intelligence (“giftedness”), I investigate the distinction between prevention and enhancement, and demonstrate the relevance for this discussion of classifying neurological difference as an identity rather than an affliction. By analysing different concepts and arguments, I highlight the need for a new framework for maternal, parental and collective responsibility that is applicable to the context of neurology, epigenetics and beyond.

This paper introduces Bioethics-in-Science (BiS), a novel methodological approach entangling bioethical inquiry directly within scientific practice. Drawing inspiration from Van Rensselaer Potter's original vision of bioethics as a collaborative bridge between biology and ethics, BiS represents a community of practice aimed to contribute to bioethical inquiry in three key ways. First, it reframes the relationship between ethics and science by treating scientific practice as inherently value-laden and recognizing scientists’ relevant ethical expertise. Second, it develops methods–including ethics notebooks, collaborative workshops, and conceptual mapping–that facilitate a shift from mere external evaluation towards continuous ethical deliberation within research environments. Third, it demonstrates how bioethical inquiry can actively contribute to improving scientific practice through the co-creation of knowledge and values. Through case studies from synthetic biology, neurodiversity research, and proteomics, we illustrate how BiS arose from and operates in practice and examine the challenges of crossing disciplinary boundaries. As such, we position BiS as offering a pathway for bioethical inquiry to move beyond its peripheral position vis-à-vis the sciences and engage meaningfully with the normative dimensions of scientific knowledge production instead, ultimately contributing to both better ethics and science.

In this paper, we report the results from an experimental reproductive ethics study exploring questions about reproduction and parenthood. The main finding in our study is that, while we may assume that everyone understands these concepts and their relationship in the same way, this assumption may be unwarranted. For example, we may assume that if ‘x is y’s father’, it follows that ‘y is x’s child’. However, the participants in our study did not necessarily agree that it does follow. This means, at the very least, that we need to make sure all parties in a debate have the same relationships in mind when talking about reproduction and parenthood. Moreover, it gives us reason to explore more carefully the conditions which support or undermine the connections between these concepts. This cannot come from purely theoretical reasoning, nor from empirical research alone, but from the alliance between the two.

Our research describes the experiences, views, and attitudes of participants of mediation dialogue groups involving non-related traffic accidents regarding their participation and related topics, such as responsibility, rehabilitation, and restoration. In Belgium, the criminal law holds that victims and offenders need to be informed about the option of entering a restorative mediation process during criminal proceedings. Mediation is voluntary and provided by an independent state-funded organization. We collected the data through individual semi-structured in-depth interviews with participants of two mediation dialogue groups. The data were analyzed through reflexive thematic analysis. We identified three main themes: (a) the importance of shared stories, (b) blurred boundaries, and (c) opportunities and obstacles for repair. Overall, our analysis suggests that mediation involving similar but non-related incidents may provide the participants with valuable knowledge and insights about one another's lives and thoughts and lead to mutual understanding and support. For some, it may even involve a transformative experience. Importantly, our analysis reveals that (a) the presence of a “shared story” and (b) a group dynamic in which participants feel sufficiently at ease with each other are pivotal to achieving a sense of connection and resonance that allows for such mutual understanding and support. These appear to be prerequisites for enabling any kind of healing.

Background Truth-telling in health care is about providing patients with accurate information about their diagnoses and prognoses to enable them to make decisions that can benefit their overall health. Physicians worldwide, especially in the United Kingdom (U.K.) and the United States (U.S.), openly share such medical information. Bangladesh, however, is a Muslim-majority society with different social norms than Western societies. Therefore, we examined whether Muslim culture supports truth disclosure for patients, particularly how and to what extent medical information about life-threatening diseases is provided to patients in Bangladesh. Methods This was a phenomenological qualitative study. We conducted thirty in-depth interviews with clinicians, nurses, patients and their relatives at Shaheed Suhrawardy Medical College Hospital in Dhaka, Bangladesh. We also used observations to explore interactions between patients, families and healthcare professionals regarding their involvement in medical decisions and truth disclosure issues. NVivo software was used to identify common themes, and a thematic analysis method was utilised to analyse the datasets. Results This study identified three recurring themes relevant to the ethics and practice of truth disclosure: best interest rather than autonomy, the ambivalent value of deception and who understands what. The participants revealed that physicians often withhold fatal medical prognoses from terminally ill patients to ensure the best healthcare outcomes. The results indicate that deception towards patients is commonly accepted as a means of reducing burden and providing comfort. The participants opined that true medical information should be withheld from some patients, assuming that such disclosures may create a severe burden on them. Whether or to what extent medical information is disclosed primarily depends on a family’s wishes and preferences. Conclusions While truth disclosure to patients is considered an ethical norm in many cultures, such as in the U.K. and the U.S., the practice of concealing or partially revealing severe medical prognoses to patients is an actual medical practice in Bangladeshi society. This study emphasises the importance of recognising a patient’s active involvement and respecting the cultural values that shape family involvement in medical decision-making. These findings may have significant policy and practical implications for promoting patient autonomy within Bangladeshi family dynamics and religious-based cultural values.

In this chapter, we describe three areas within the broad field of ecogenomics or postgenomics: epigenetics, proteomics, and microbiomics. We argue that these fields challenge traditional bioethics in different ways. Since epigenetic, proteomic, and microbiomic data may contain phenotypical information, they may intensify discussions about consent, privacy, and return of results. But these fields also firmly position organisms, including human beings, as deeply entangled with their environments, as constituted by context, history, and experiences as much as genes. This yields new insights into concepts of health and development. We discuss precision medicine as an example of a systemic approach to health. We argue that acknowledging the entanglement of organism and environment also means recognizing the importance of interdisciplinarity for bioethics and thinking together biomedical ethics and environmental ethics.

The screening of in vitro embryos resulting from in vitro fertilization treatment for chromosomal abnormalities has as a primary aim to help patients achieve a successful pregnancy. Most IVF centers will not transfer aneuploid embryos, as they have an enhanced risk of leading to implantation failure and miscarriage. However, some aneuploidies, such as trisomy-21, can lead to viable pregnancies and to children with a variable health prognosis, and some prospective parents may request transfer of such embryos. I present two cases where the testing for and detection of trisomy-21 can lead to conflicts between IVF professionals and patients and argue that in most such cases respect for choices of patients should prevail

Current and past pandemics have several aspects in common. It is expected that all members of society contribute to beat it. But it is also clear that the risks associated with the pandemic are different for different groups. This makes that appeals to solidarity based on technocratic risk calculations are only partially successful. Objective ‘risks of transmission’ may, for example, be trumped by risks of letting down people in need of help or by missing out certain opportunities in life. In this paper we argue that a rapprochement of the insights of standpoint epistemology with pandemic science and pandemic policy making may be an important step toward making pandemic science more accurate and pandemic calls for solidarity more effective.

This report is grounded in several social concepts: First, the primary goal of genetic testing should be to promote the well-being of the child. Second, the recognition that children are part of a network of family relationships supports an approach to potential conflicts that is not adversarial but, rather, emphasizes a deliberative process that seeks to promote the child's well-being within this context. Third, as children grow through successive stages of cognitive and moral development, parents and professionals should be attentive to the child's increasing interest and ability to participate in decisions about his or her own welfare

The diagnosis of autism is on the rise. Autistic people, parents, professionals, and policy makers alike face important questions about the right approach toward autism. For example, there are questions about the desirability of early detection, the role and consequences of underlying cognitive theories, and whether autism is a disorder to be treated or an identity to be respected. How does the fact that autism is a heterogeneous concept affect the answers to these questions? Who has the authority or knowledge to speak on behalf of people with autism? In this paper, we describe a cluster of research topics which should be on the agenda of the emerging field of autism ethics. These topics include the very concept of autism itself, the question whether autism is primarily an identity or a disorder, the ethical questions that parents of autistic children face, metaethical questions, the ethical consequences of epistemological questions, and a cluster of questions related to social justice, stigma, and paternalism.

Existing empirical research often do not explain which concepts about genetics underlie the assumption that genetic information is deemed important for donor-conceived offspring. This study focused on how donor-conceived individuals following anonymous sperm donation give meaning to and make sense of genes and genetics. Analysis is based on focus groups and interviews with adult donor-conceived offspring. Findings suggest that genes are part of their specific context of being donor-conceived but also play a role in daily life. Genes make sense on an individual level and a relational level, both on parent-child as sibling-level. On an individual level they were perceived as (1) a biological starting package, (2) their own unique combination and (3) as a reference point. On a relational level, genes were seen as (1) “person-al”, (2) connecting and (3) locating individuals. This information is essential for those supporting/counseling donor conceived offspring and families as well as for policy-members.

The combination of the issue of return of individual genetic results/incidental findings and paediatric biobanks is not much discussed in ethical literature. The traditional arguments pro and con return of such findings focus on principles such as respect for persons, autonomy and solidarity. Two dimensions have been distilled from the discussion on return of individual results in a genetic research context: the respect for a participant’s autonomy and the duty of the researcher. Concepts such as autonomy and solidarity do not fit easily in the discussion when paediatric biobanks are concerned. Although parents may be allowed to enrol children in minimal risk genetic research on stored tissue samples, they should not be given the option to opt out of receiving important health information. Also, children have a right to an open future: parents do not have the right to access any genetic data that a biobank holds on their children. In this respect, the guidelines on genetic testing of minors are applicable. With regard to the duty of the researcher the question of whether researchers have a more stringent duty to return important health information when their research subjects are children is more difficult to answer. A researcher’s primary duty is to perform useful research, a policy to return individual results must not hamper this task. The fact that vulnerable children are concerned, is an additional factor that should be considered when a policy of returning results is laid down for a specific collection or research project.

Procreation in the face of an apocalypse: Some ethical considerations In the field of procreation ethics both Kantian and consequentialist arguments have been developed purporting to show the moral impermissibility of having (more than two) children. A survey of the most important arguments leaves us wondering whether one could derive general obligations or prohibitions from abstract principles and apply them to deeply personal decisions about whether or not to have children (and how many). At the same time it is undeniably true that having children, however private the decision to procreate may feel, has an impact far beyond the private sphere. While we argue that the answer to the question whether or not to have a child cannot be derived from moral principles, we recognize that moral considerations about global and intergenerational justice do pertain to the question. We therefore develop an alternative framework for traditional Kantian and consequentialist approaches in procreation ethics, which we call holistic virtue ethics.

In this paper, I review some of the discussions on procreative beneficence and procreative autonomy in the context of postponed motherhood and compare the considerations to the context of advanced paternal age. In doing so, I will give an overview of the main scientific findings with regard to how older age in men affects the health of future offspring. I shall demonstrate how the discrepancy between the media coverage and policies on postponed motherhood and postponed fatherhood mistakenly suggests that women are more responsible than men for the health of offspring.