Ina Devos

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.

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.

Data-intensive healthcare has an equity problem. As data-intensive healthcare expands, historical injustices embedded in existing datasets limit its benefits for marginalized groups. While national and international Precision Medicine Research (PMR) initiatives - like All of Us (US) and the 100k Genome Project (UK) - aim to address these gaps through targeted inclusion, such strategies carry exploitative potential. Representative data serves not only underserved communities but also public and commercial interests, raising additional ethical concerns about how data gaps are filled. This paper critically examines targeted inclusion efforts and discussions thereof in PMR ethics, which tend to overlook the risks and social conditions participants face during research participation. Drawing on the concept of 'clinical labor', we introduce the idea of health data labor - the often invisible, unequal labor involved in health data generation. This framing helps expose how the burdens and risks of PMR participation may follow existing social inequities. We argue that without addressing these inequities in the participation process, inclusionary efforts risk reinforcing injustice. We conclude by proposing 'labor-sensitive research design' - a set of practices to make PMR more equitable in both process and outcome.

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.