The recent advancements in artificial intelligence (AI), and data science more broadly, have led to a proliferation of new methods and tools, such as machine learning (ML), that are used in all kinds of scientific research, from biomedical research through to environmental and education research. Research ethics review bodies are increasingly required to review AI research protocols that cover these different fields of enquiry. Questions have been raised regarding the appropriateness of existing ethics governance principles, practices, and processes to deal with the ethical challenges that AI and data science are introducing to research. Universities and research institutions across the world are trying to understand how to translate and practically implement broad AI ethical principles into research ethics governance guidelines and processes. In this article, we report on an expert stakeholders’ workshop organised at the University of Oxford as part of the process of reviewing its ethics governance for AI research. We describe the workshop and present the reflections and recommendations that emerged from it. The aim of the article is to share the approach taken by the University of Oxford CUREC in reviewing its ethics governance processes, and the insights gained with the broader research community, as a way of contributing to this scarce body of literature, facilitating further dialogue, promoting debate and collaboration on this important issue.

Most literature on research ethics originates from the perspectives of international researchers and, to a lesser extent, research subjects. This article goes beyond the prevailing understanding of ethical misconduct as a failure to secure informed consent, data breaches, coercion, or misuse of data. Instead, it seeks to develop the notion of ‘mundane ethical harms’ in conflict- and disaster-affected research, which are rooted in and shaped by the systemic power inequalities between researchers across global Northern and global Southern institutions. This article centres on mundane ethical harms from the perspective of local researchers. Drawing on interviews and workshops from the Balkans, Colombia, and Nepal, we show that local researchers are caught between formal ethical frameworks – often biomedical in origin or defined in the global North – and local understandings of, and demands for, ethical practice. Acknowledging that regional and contextual experiences and understanding of ethics matter and may differ, we highlight commonalities of ethical harms that were consistent across the three regions to inform more context-sensitive procedural ethics across global North–South research collaborations. We argue that mundane ethical harms highlight the limits of procedural ethics that may be unintentional but tend to obscure the harms experienced by those caught in the middle of an unequal research environment.

The right to withdraw consent from research is a well-established right of research participants. This paper examines what it means to withdraw consent from biobank research in the European Union (EU) and the European Economic Area (EEA) – where biobank data is regulated by the General Data Protection Regulation (GDPR) – and how the implications of consent withdrawal are communicated to potential sample donors. An analysis of two biobank consent documents, one from Finland and one from Germany, indicates that donors are informed of the right to withdraw but receive potentially misleading information about its consequences. In particular, the documents do not clarify that withdrawal may not prevent further use of data, overstating the right’s practical effect. This communicative strategy risks undermining informed consent and may erode trust in biobanks as research institutions if sample donors come to feel that they have been deceived. To address this issue, it is recommended that biobanks provide clear and accurate information about the legal impact of consent withdrawal on associated data.

The return of individual pharmacogenomic research results is increasingly recognized as an ethical obligation, reflecting participants' right to information and researchers' duty of care. However, implementing this in low-resource settings poses significant ethical and logistical challenges. We explored stakeholders' attitudes and challenges to the process of returning individual pharmacogenomics research results in Uganda. Between September 2021 and February 2022, we conducted 54 qualitative interviews. These included five focus group discussions with 30 community representatives across five HIV research institutions, 12 key informant interviews with researchers, and 12 in-depth interviews with ethics committee members. A thematic approach was used to interpret the results. Four themes emerged from this data. These included (i) attitudes towards returning individual pharmacogenomics results to people living with HIV; (ii) social and ethical implications of returning results; (iii) perceived challenges to the return of results; and (iv) proposed recommendations to overcome the challenges. Returning results reflects principles of reciprocity and equity, and is a source of hope to many people living with chronic illnesses. However, stakeholders raised challenges, including low literacy levels and absence of direct translation of genetic terms, which may lead to misinterpretation of the results; depression and anxiety; stigma and discrimination that could result from breach of confidentiality and privacy. Stakeholders highlighted the need to sensitize the public about the role of genes in an individual's body. Returning pharmacogenomic results to vulnerable populations is ethically important, but must be approached with caution due to implications that may extend beyond the individual. Stakeholders emphasized the need for national guidelines and institutional standard operating procedures to ensure results are communicated safely and sensitively.

Academic research from years past has increasingly come under scrutiny for a variety of reasons. While it is imperative that flawed studies based on obvious research misconduct receive notices of retraction or expressions of concern, it is unclear to what extent these corrective actions apply to published research that is historical, based on clearly unethical human experimentation, and already de facto retracted based on unanimous views within the academic community. The controversy over the use of unethically obtained specimens and data derived from them for research and education is not new to bioethics, but the US Public Health Service project, the Tuskegee Study of Untreated Syphilis (TS), has not been subjected to such scrutiny. We identified 19 articles published under 13 different journal titles between 1936 and 1973 that detailed the results of TS. We examined journal records and found that none of the 19 selected publications derived from TS ever received a retraction notice or expression of concern. Only one of these publications has an accompanying commentary for its online publication context. We discussed various options for potentially amending journal archives containing TS publications, reviewed guidelines from CIOMS, COPE, and ICMJE. We suggest that academic journals establish a clear policy and guidelines on publications based on unethical research, for issuing a retraction for unethical research, as clear as the policy for research misconduct, and that a grace period be introduced into academic publishing to cover unethical research. To promote the publication ethics of correcting the scientific record, we urge the original or successor journals that published TS to consider adding notices to the articles as they deem appropriate.

This study addresses the current lack of empirical data on the experiences and attitudes of clinical research professionals towards AI-powered clinical trial management tools. Clinical research professionals affiliated with various Swiss and international clinical research networks were invited to participate in an online survey. The survey focused on nine use cases of AI-powered clinical trial management tools. Participants were asked to share their ethical considerations, and their experiences were assessed at both the individual and institutional levels. Answers from 110 participants, primarily from Swiss academic institutions, were included in the data analysis. While participants generally held positive attitudes, mixed views were also common. Governmental attitudes were widely perceived as unclear or cautious, with the associated regulatory opacity possibly contributing to the limited adoption of AI in trial management observed in this study. In addition to a clear AI governance, ethical compliance and training emerged as crucial aspects. There was also broad consensus on the necessity of informing patients about tools’ uses and of ensuring an independent certification of the respective tools. The widespread adoption of AI-powered clinical trial management tools remains distant, entangled in a net of complexities that require further empirical investigation. Ethical concerns appear to play a crucial role, driven by distrust and the absence of a clear regulatory framework. Urgent actions are needed at both institutional and governmental levels, including the establishment of a governance framework and training provision.

Social work research often requires the exploration of sensitive topics that concern hard-to-reach populations. In order to gain access to these groups, researchers are often forced to rely on gatekeepers during the research process. Gatekeepers become intermediaries who help the researchers to establish this access. In this article, we focus on institutional gatekeepers and the circumstances under which they deny access to research participants. And how the researchers themselves react to this situation in the context of Czech social work research. We used qualitative research, in particular semi-structured interviews with researchers. Based on the research, we identified three main practices of researchers when gatekeepers refuse access. These are conducting research despite denial, making changes to methodology and conducting covert research. The identified procedures bring with them a number of ethical questions that need to be addressed.

Biomedical research, on the one hand, contributes to important goals from generation of knowledge about the human body to the development and testing of therapeutics of all kinds. On the other hand, it can produce serious and sometimes unforeseeable consequences. In the ethical analysis of these two aspects of biomedical research, two important argumentative strategies play a major role. First, slippery slope arguments are used to warn of potential risks and to highlight knowledge-based limitations. Second, a dual-use problem describes the challenge that already established techniques can be used for both morally wrong and morally right purposes. These two argumentative strategies appear to share several similarities, which will be investigated in this article. For this purpose, the article will first provide clear working definitions for both types of argument. This lays the foundation for the further ethical analysis. In a second step, and in order to investigate the similarities and differences of the argumentative strategies with an example from current ethical debates, CRISPR-Cas9, a currently very promising tool of genome editing, will be examined. The extent to which the possible applications of this genome editing tool can be addressed by slippery slope arguments or the dual use problem will be investigated. For this purpose, selected studies involving the use of CRISPR-Cas9 will be examined. Based on this two-step, analytic and example-based comparison of slippery-slope argumentation and dual-use considerations, the article will detail the ethically relevant difference between the two argumentative strategies and at the same time contribute to the ongoing ethical debate about CRISPR-Cas9.

Since its onset, scholars have characterized social media as a valuable source for data collection since it presents several benefits (e.g. exploring research questions with hard-to-reach populations). Nonetheless, methods of online data collection are riddled with ethical and methodological challenges that researchers must consider if they want to adopt good practices when collecting and analyzing online data. Drawing from our primary research project, where we collected passive online data on Reddit, we explore and detail the steps that researchers must consider before collecting online data: (1) planning online data collection; (2) ethical considerations; and (3) data collection. We also discuss two atypical questions that researchers should also consider: (1) how to handle deleted user-generated content; and (2) how to quote user-generated content. Moving on from the dichotomous discussion between what is public and private data, we present recommendations for good practices when collecting and analyzing qualitative online data.