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.
Devos et al. (Wed,) studied this question.