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This chapter explores the role of an ethics committee led by disabled academics, in supporting co-produced disability research beyond academia, in the context of a five-year research programme in the UK (2015–2020). This chapter includes reflections by the Ethics Committee members, alongside documentary research which analysed the communications between the Ethics Committee and the research projects it supported. This review of the role of the Ethics Committee showed that there were dilemmas in considering the boundaries between ethical review and providing pedagogic advice on research design, and in balancing its role in supporting and regulating research. Ethics review processes are sometimes seen as overly bureaucratic and as an obstacle course for researchers, and this was also sometimes the case for projects supported by the DRILL (Disability Research on Independent Living and Learning) Ethics Committee. Lessons to be learned from the process included that communication between ethics committees and researchers is key, and that ethics review can be a two-way process, recognising the expertise of both the researchers and the reviewers, thus mirroring the principles of co-production. We suggest that an alternative model for ethics review process could build on this generally positive experience of the DRILL Ethics Committee.

For many Indigenous nations globally, ethics is a conversation. The purpose of this paper is to share and mobilize knowledge to build relationships and capacities regarding the ethics review and approval of research with Indigenous peoples throughout Atlantic Canada. The authors share key principles that emerged for shifting practices that recognize Indigenous rights holders through ethical research review practice.

The NunatuKavut Inuit hosted and led a two-day gathering on March 2019 in Happy Valley-Goose Bay, Newfoundland and Labrador, to promote a regional dialogue on Indigenous Research Governance. It brought together Indigenous Nations within the Atlantic Region and invited guests from institutional ethics review boards and researchers in the region to address the principles-to-policy-to-practice gap as it relates to the research ethics review process. Called “Naalak”, an Inuktitut word that means “to listen and to pay close attention”, the gathering created a dynamic moment of respect and understanding of how to work better together and support one another in research with Indigenous peoples on Indigenous lands.

Through this process of dialogue and reflection, emergent principles and practices for “good” research ethics were collectively identified. Open dialogue between institutional ethics boards and Indigenous research review committees acknowledged past and current research practices from Indigenous peoples’ perspectives; supported and encouraged community-led research; articulated and exemplified Indigenous ownership and control of data; promoted and practiced ethical and responsible research with Indigenous peoples; and supported and emphasized rights based approaches within the current research regulatory system. Key principles emerged for shifting paradigms to honour Indigenous rights holders through ethical research practice, including: recognizing Indigenous peoples as rights holders with sovereignty over research; accepting collective responsibility for research in a “good” way; enlarging the sphere of ethical consideration to include the land; acknowledging that “The stories are ours” through Indigenous-led (or co-led) research; articulating relationships between Indigenous and Research Ethics Board (REB) approvals; addressing justice and proportionate review of Indigenous research; and, means of identifying the Indigenous governing authority for approving research.

Future steps (including further research) include pursuing collective responsibilities towards empowering Indigenous communities to build their own consensus around research with/in their people and their lands. This entails pursuing further understanding of how to move forward in recognition and respect for Indigenous peoples as rights holders, and disrupting mainstream dialogue around Indigenous peoples as “stakeholders” in research.

The first step in moving forward in a way that embraces Indigenous principles is to deeply embed the respect of Indigenous peoples as rights holders across and within REBs. This shift in perspective changes our collective responsibilities in equitable ways, reflecting and respecting differing impetus and resources between the two parties: “equity” does imply “equality”. Several examples of practical changes to REB procedures and considerations are detailed.

What the authors have discovered is that it is not just about academic or institutional REB decolonization: there are broad systematic issues at play. However, pursuing the collective responsibilities outlined in our paper should work towards empowering communities to build their own consensus around research with/in their people and their lands. Indigenous peoples are rights holders, and have governance over research, including the autonomy to make decisions about themselves, their future, and their past.

The value is in its guidance around how authentic partnerships can develop that promote equity with regard to community and researcher and community/researcher voice and power throughout the research lifecycle, including through research ethics reviews that respect Indigenous rights, world views and ways of knowing. It helps to show how both Indigenous and non-Indigenous institutions can collectively honour Indigenous rights holders through ethical research practice.

This chapter centers on practices of Review Ethics Board (REBs) as they may impact academic freedom for faculty members acting as participants in research. A case example is provided, which highlights the authors’ experience applying for ethics clearance to conduct a qualitative research study. While the study was classified as minimal risk and received ethics clearance from the researchers’ host institution, additional research ethics applications were required from the higher education settings identified, before being able to recruit participants. In addition to pressing timelines, extra workload and the coordination of different requirements for each institution, not all REBs permitted faculty members the option to reveal their identity and their beliefs on pedagogical practices. This particular experience with the ethics review process elicited questions centering on research ethics committees’ practices in terms of (a) providing opportunities for faculty members, as participants in research, to freely share information about their beliefs and teaching practices as well as (b) infringing on faculty members’ autonomy and rights to intellectually express, share and take ownership of their personal beliefs and pedagogical approaches to teaching in higher education.

This paper examines beliefs and attitudes in the context of how they influence the decisions of university Human Research Ethics Committees (HRECs) as a preface to undertaking an empirical study in this area. It also aims at establishing a conceptual framework to guide the design of a questionnaire targeting beliefs about research ethics and the implications of these beliefs on review practices of HREC members throughout Australia.

Using content analysis of the extant body of the literature the paper examines the relationship between the concepts of beliefs and knowledge, beliefs and attitudes, and among beliefs, attitudes and behaviour in the context of research ethics.

The discussion suggests that ethics approval practices can, at times, be influenced more by personal beliefs than by contemporary review standards. It is also suggested that personal beliefs can be transmitted through the review process and that HRECs can serve to influence the transfer of values from reviewers to researchers.

The framework that this paper presents has the potential to appraise an array of perspectives which in turn would guide the design of professional development programs. In addition, an improved, more nuanced understanding of how HREC members make ethical decisions will positively impact and inform best practice in the review of ethical applications for research projects.

The paper presents a novel theoretical framework underpinning research ethics reviewer beliefs and attitudes within a contemporary context.

The Mental Capacity Act 2005 (HM Government, 2005) introduced safeguards to protect people who lack capacity from intrusive research. While these safeguards stemmed from predominantly medical ethical review concerns and developments aimed to protect people from physical and psychological damage and harm, the Act relates to all forms of research. The implications of the requirements of the Act for the conduct of social care research and the identification of helpful approaches or development of new knowledge concerning people who may lack capacity are, as yet, unknown. There are some concerns that the Act does not fully account for social research, does not recognise its importance to and differences from health‐related research, and may even hamper such research from taking place. This paper describes the findings and implications from a research project funded by the Social Care Institute for Excellence (SCIE) and the Department of Health that considered the impact of the Mental Capacity Act 2005 on the ethical scrutiny and development of social care research. The particular focus of the study was processes relating to university research ethics committees (URECs). The study was undertaken in two stages, beginning with an online survey of UREC policies and procedures and was followed by interviews with social care researchers working in areas in which people may lack capacity according to the terms of the Act. Recommendations for research ethics review are made that will be of importance to practitioners, policy‐makers and researchers.

Training in research ethics in higher education institutions tends to be increasingly focussed on operational instruction and how to navigate review processes. This has largely come about as a result of the gradual extension of the ‘medical model’ of prospective ethics review to all research involving human participants over the last few decades. Often devolved to an administrator, the purpose of instruction in research ethics is sometimes reduced to form-filling techniques. While this may serve to facilitate researchers’ compliance with ‘auditable’ regulatory requirements, and to reassure risk-averse universities that they can demonstrate rigorous oversight, it does nothing to skill researchers in assessing the ethical implications of their own research. Mastering the skills to address and mitigate the moral dilemmas that can emerge during a research project involves more than having a pre-determined set of options for research practice. Changing their perception means enabling researchers to view themselves as ethical practitioners within a broader community of researchers. In this chapter we discuss the implementation of a university training programme that has been designed to improve both the moral character, and thus the moral competence of researchers. Using a virtue ethics approach, we employed case studies and discussion, backed up by provision of individualised advice, to help researchers to consider the moral implications of research and to improve their moral decision-making skills. Attendees reported greater engagement with the issues and increased confidence in facing ethical dilemmas in their own research.

This chapter explores the perfect storm brewing at the interface of an increasingly organized ethics review process, grounded in principles of anonymity and informed consent, and the formation of a new digital data landscape in which vast quantities of unregulated and often personal information are readily available as research data. This new form of data not only offers huge potential for insight into everyday activities, values, and networks but it also poses some profound challenges, not least as it disrupts the established principles and structures of the ethics review process. The chapter outlines four key disruptions posed by social media data and considers the value of situational ethics as a response. Drawing on the experiences and contributions of Ph.D. students in interdisciplinary Web Science, the chapter concludes that there is a need for more sharing of the ethical challenges faced in the field by those at the ‘cutting edge’ of social media research and the development of shared resources. This might inform and speed-up the adaptation of ethics review processes to the challenges posed by new forms of digital data, to ensure that academic research with these data can keep pace with the methods and analyses being developed elsewhere, especially in commercial and journalistic contexts.

Over recent decades, research institutions have prescribed discrete ethics guidelines for human research with Indigenous people in Australia. Such guidelines respond to concerns about unethical and harmful processes in research, including that they entrench colonial relations and structures. This chapter sets out some of the limitations of these well-intentioned guidelines for the decolonisation of research. Namely, their underlying assumption of Indigenous vulnerability and deficit and, consequently, their function to minimise risk. It argues for a strengths-based approach to researching with and by Indigenous communities that recognises community members’ capacity to know what ethical research looks like and their ability to control research. It suggests that this approach provides genuine outcomes for their communities in ways that meet their communities’ needs. This means that communities must be partners in research who can demand reciprocation for their participation and sharing of their knowledge, time and experiences. This argument is not purely normative but supported by examples of Indigenous research models within our fields of health and criminology that are premised on self-determination.

The purpose of this paper is to attempt to investigate how Information and Communications Technology (ICT) researchers in UK computing departments address ethics in their research. Whilst research and innovation in ICT has blossomed in the last two decades, the ethical, social and legal challenges they present have also increased. However, the increasing attention the technical development receives has not been replicated in the area of developing effective guidelines that can address the moral issues inherent in ICT research.

This research is qualitative and made use of interviews. The data analysis was done with dialectical hermeneutics. Through a dialectical hermeneutic process, this research unpacks different understandings of relevance attached to ethics reviews of ICT research in UK computing departments.

The findings include that ethics reviews are relevant because; it is a moral duty, it improves trust for researchers, it is part of risk assessment, it is in compliance with the law and it is a sustainable act.

These various understandings illustrate an important dialectic process on the current state of the art in ICT research.

It asks to what degree the currently dominant model of ethics review based on biomedical ethics is optimal to ICT.

It proposes a framework that can effectively help researchers and administrators to ensure responsible research and innovation in ICT. Finally, it identifies that ICT researchers would benefit from the developing repertoire of responsible research innovation.

This chapter describes the pivotal shift occurring in our national research psyche whereby Indigenous epistemology is increasingly recognised as both valid and enriching. Two key contentions emerge from a description and discussion of this shift. First, ethics review bodies must evolve to incorporate a wider knowledge framework, one which conscientiously locates Indigenous knowledge and which empowers researchers to appropriately traverse Aotearoa New Zealand’s cultural terrain. The second contention argues that there are ethical responsibilities to address inequities, based on our shared Treaty partnership, and that ethics review bodies should instantiate consideration of inequities within their oversight roles. This chapter sets the scene by describing the current shift away from Western homogeneity to cultural diversity in education, noting the formal higher learning undertaken by Māori prior to colonisation, alongside current Māori educational achievement and the goal of success as Māori. The emerging recognition of mātauranga Māori (Indigenous epistemology) is exemplified by Ngā Pae o te Māramatanga and Vision Mātauranga. However, this shift has not yet reached all parts of the New Zealand research community, and we argue particularly so for ethics review processes. Possible solutions are posed, and four cultural markers are offered as supporting foundations for professionals in the field as they traverse epistemological landscapes that are more attuned to Indigenous realities.