Emotions in human research ethics guidelines: Beyond risk, harm and pathology

Drawing on a discourse analysis of emotions in national human research ethics guidelines from Australia, Singapore, the United Kingdom and United States, I argue that such guidelines treat emotions as superfluous, harmful, risky and threats to rational decision-making. Such uncritical appreciation of emotions sees instructions to show ‘respect’ position non-Western participants as ‘the other’, sees directives to consider ‘emotional welfare’ undermine the autonomy of people from ostensibly vulnerable groups, and risks undermining qualitative research’s cathartic potential. These findings underpin a call to revise guidelines to position emotions as part of everyday life; and to encourage researchers to adopt embodied, caring and emotionally reflexive approaches to human research, where researchers draw on guidelines and emotions in deciding how to produce ethical research.

A critical self-reflexive account of a privileged researcher in a complicated setting: Kakuma refugee camp

As a white, Western-educated man, undertaking research in Kakuma refugee camp, Kenya, I encountered ethical dilemmas related to my privileged racial and gender status. These include power imbalances between researchers and refugees and conducting research in the face of human suffering. Through critical self-reflexivity, I analyze my own experiences to reveal the personal and professional vulnerabilities that researchers from high-income countries (HICs) may encounter when working in contexts where oppression and forced displacement are prominent. I conclude that researchers who work in contexts of forced migration must extend beyond the boundaries of procedural research ethics and include components of relational ethics. This involves close collaboration with refugee participants to develop more culturally relevant research ethics guidelines for refugee-specific populations.

Transparency of informed consent in pilot and feasibility studies is inadequate: a single-center quality assurance study

Background Pilot and feasibility studies (PAFS) often have complex objectives aimed at assessing feasibility of conducting a larger study. These may not be clear to participants in pilot studies. Methods Here, we aimed to assess the transparency of informed consent in PAFS by investigating whether researchers communicate, through patient information leaflets and consent forms, key features of the studies. We collected this data from original versions of these documents submitted for ethics approval and the final approved documents for PAFS submitted to the Hamilton Integrated Research Ethics Board, Canada. Results One hundred eighty-four PAFS, submitted for ethics approval from 2004 to 2020, were included, and we found that of the approved consent documents which were provided to participants, 83.2% (153) stated the terms “pilot” or “feasibility” in their title, 12% (22) stated the definition of a pilot/feasibility study, 42.4% (78) of the studies stated their intent to assess feasibility, 19.6% (36) stated the specific feasibility objectives, 1.6% (3) stated the criteria for success of the pilot study, and 0.5% (1) stated all five of these criteria. After ethics review, a small increase in transparency occurred, ranging from 1.6 to 2.8% depending on the criteria. By extracting data from the protocols of the PAFS, we found that 73.9% (136) stated intent to assess feasibility, 71.2% (131) stated specific feasibility objectives, and 33.7% (62) stated criteria for success of the study to lead to a larger study. Conclusion The transparency of informed consent in PAFS is inadequate and needs to be specifically addressed by research ethics guidelines. Research ethics boards and researchers ought to be made aware and mindful of best practices of informed consent in the context of PAFS.

There for the Reaping: The Ethics of Harvesting Online Data for Research Purposes

Online social environments offer a rich source of data that researchers can harvest to gain insight into a wide range of social issues. This type of research is sometimes considered as observation of public behaviour, and therefore exempt from ethical review. This type of research, however, raises ethical issues with respect to the public/private nature of online spaces, consent, and anonymity in the online environment. This project examines research ethics guidelines for recommendations regarding the use of harvested online data, identifying best practices for researchers who engage in this type of research. Les media sociaux offrent une riche source de données que les chercheurs peuvent récolter pour mieux comprendre un large éventail de problèmes sociaux. Ce type de recherche est parfois considéré comme une observation du comportement du public, et donc exempt de tout examen éthique. Ce type de recherche, cependant, soulève des problèmes éthiques en ce qui concerne la nature publique / privée des espaces en ligne, le consentement et l'anonymat dans l'environnement en ligne. Ce projet examine les lignes directrices en matière d'éthique de la recherche pour des recommandations concernant l'utilisation des données récoltées en ligne, identifiant les meilleures pratiques pour les chercheurs qui s'engagent dans ce type de recherche.

Ensuring Privacy of Participants Recruited via Social Media

Researchers worldwide are increasingly looking to recruit research participants via social media (particularly @Facebook and @Twitter) because they appear to offer access to a wider range of research participants and afford inherently convenient tools for recruitment. In Australia, the National Statement on Ethical Conduct in Human Research, together with the federal Privacy law and a number of state-based privacy statutes, provide support and guidance for this novel approach. This article offers a preliminary analysis and discussion of this trend from an Australian perspective, illustrated by an enquiry into the ethical challenges posed by social media-based recruitment, conducted in an Australian university in 2015. Leximancer™ was used as an analytical tool and the content from social media sites used for a small number of research studies conducted up to 2015, taken in conjunction with the various national human research ethics guidelines, offered a means of understanding how ethical challenges of privacy and anonymity can be addressed for responsible social media-based research.

Regulating impact on bystanders in clinical trials: An unsettled frontier

This article informally reviews key research ethics guidelines and regulations, academic scholarship, and research studies and finds wide variety in how they consider risk to bystanders in medical research (namely, non-participants whom studies nevertheless place at risk). Some of these key sources give no or very little consideration to bystanders, while others offer them the utmost protection (greater than they offer study participants). This unsettled frontier would benefit from a deeper investigation of the ethics of protecting research bystanders.