Mark Israel

Bradley Garrett, an urban ethnographer, took part in exploration of British urban space that involved trespass onto land owned by the public transport authority. Garrett argued that it was ‘deeply problematic’ to block research on people simply because they lived close to ‘legal boundaries’. He also argued that participant observation with such groups might entail breaking the law. In 2012, Garrett and eight participants were arrested and charged with conspiracy to commit criminal damage and the prosecution based its case on research notes seized from Garrett. The case ended with Garrett receiving a conditional discharge. This chapter uses this ‘urban explorer’ case study to explore the justifications that might exist for undertaking covert research, for researchers breaking the law or for doing harm to participants and other interested parties, the ethics of autoethnography, the dangers of romanticising the subject of research, and the difficulties of negotiating multiple roles as researcher, urban explorer, political activist, journalist and filmmaker.

Purpose: A laryngectomy impacts communication, swallowing and breathing. It is disfiguring and can disrupt quality of life, one’s sense of identity, and relationships. It can increase dependence on others, trigger social stigma, avoidant coping and suicidal risk. Qualitative research has the potential to enable greater understanding of these consequences. However, almost nothing has been written about the specific ethical issues that can arise when carrying out research with people with laryngectomy (PWL). This paper builds on the experiences of the authors in the field and seeks to examine and explain these research ethics considerations and how they impact research design, data collection, data analysis and dissemination. Method: Using a framework based on the values underpinning the Australian National Statement on Ethical Conduct in Human Research, respect, merit and integrity, justice and beneficence, we have highlighted key issues relevant to this particular population. Main contribution: Different practical approaches are provided to address the ethical concerns that arise when conducting research with PWL. These include access to participants and ensuring diverse representation; balancing harm and benefit; achieving accurate interpretation, analysis and representation of the data generated through the research; research as a partnership that is respectful, empowering and fosters collaboration. Conclusion: This paper breaks new ground in discussing the ethical considerations and practical challenges relevant to researching the experiences of PWL.

Background: Conducting Patient and Public Involvement (PPI) in health research is a way of building knowledge that incorporates the experience of service users, adds research impact, and helps avoid wasting resources on findings that have little relevance to people or cannot be implemented. We argue that there is a need to extend ethical considerations currently focused on research participants with aphasia to encompass and guide expectations of involvement in partnerships with people with aphasia across the research lifecycle. Method: We use the 2018 revision of the Australian National Statement on Ethical Conduct in Human Research as the framework for this article. The National Statement is underpinned by values based on respect for human beings, research merit and integrity, justice, and beneficence. While the National Statement outlines the ethical standards for conducting human research with research participants in Australia, the ideas and principles within it draw on international norms. Building on the seven elements of the research process introduced in Chapter 3 of the National Statement, we develop a model for examining ethics and PPI across the research lifecycle. This model revolves around an extra phase, Element Zero, required for the preparation of PPI for both researchers and research partners with aphasia. Results: There are many ethical considerations when involving patients and members of the public across the research lifecycle. Ethical questions that arise in relation to patients and the public as partners (whether in a role of consultant, advisor, collaborator or within user-controlled projects) may differ from those associated with participants. The nature of the relationships built through the PPI process requires a clear extension of the remit for research ethics to encompass ethical reflection both before the design of a project and after a project has ended as represented by the Ethics and PPI Research Lifecycle Model. Conclusion: The role of people with aphasia as partners in research recognises their expertise and potential to improve the relevance and impact of research endeavours. Reflecting on the ethical implications of this is crucial, protecting, empowering and enabling both researchers and partners with aphasia to engage with each other through respectful and positive research relationships.

We begin this chapter with some comments about the nature of social problems in contemporary political discourse, followed by a review of the ethical principles of respect, beneficence and justice, and related institutionalized guidelines. We illustrate our argument with examples related to “social problems” associated with migrants, refugees, and ethnic diversity. We argue that those engaged in researching social problems not only need to conduct their inquiry with a view to the traditional ethical questions of harms, benefits, consent and confidentiality, but also to consider how to do so in societies with a declining commitment to ameliorating the conditions of the less powerful.

Many ethics review bureaucracies present signed, written forms administered at a single point in time as the default, best‐practice method for obtaining and documenting consent to participate in research. The demand is emblematic of ethics review committees’ insistence on form over function, their failure to understand the cultural contexts of field research, and erroneous assumptions about research methods. Ethnographers responding to an international survey argued that written consent may not protect participants, may mask unethical research, and may often be inappropriate for legal, cultural, political or historical reasons. We suggest the dominance of written consent reflects culturally specific views of paper, writing, signatures, and contracts grounded in particular historical imaginations of the authenticity of the signature and the power of writing and forms. Construed by ethics review institutions as culturally universal, the signed consent form has come to take on the qualities of a fetish. [research ethics, informed consent, signatures, forms, research ethics committees, institutional review boards]