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This chapter gives advice on how to obtain research ethics approval. It begins with an introduction to the UK Research Ethics Committees, which was started in 1968 and is now responsible for scrutinizing all research undertaken within the NHS.

Summing up the book, this chapter reviews the argument, notes the novelty of the partial-entrustment model and, looking forward, sets out practical steps that can be recommended even without committing to that approach. The partial-entrustment approach is shown to be an important addition to the bioethical principles set out by Beauchamp & Childress (2009) and Emanuel et al. (2004) and to evade worries about paternalism raised by Wertheimer & Miller (2007). Further, the idea of moral entanglements on which it rests is of interest, more broadly, to moral philosophers. Regarding practical steps that need to be taken, the “four Ps” of a 2008 consensus paper by participants in a Georgetown ancillary-care workshop are reiterated and reinforced, along with their framework of three key questions for Institutional Review Boards and Research Ethics Committees.

The Beyond Trauma research project aimed to improve mental health services for female survivors of childhood sexual abuse. It explored their experiences of services, and their views on how these might be improved. It also consulted mental health professionals and voluntary sector agencies working with survivors for their perspectives on the issue. This chapter highlights the author's experience as a researcher within the Beyond Trauma project in order to examine the ethical issues that arise within the ethical governance process. By examining a specific example, this chapter reflects on the governance process from the social researchers, participants' and professionals's perspectives. This chapter also considers the implications of the Research Ethics Committee (REC) decisions on research, knowledge and services.

This chapter describes the decision making of a purposively sampled group of oncology patients about taking part in a randomised controlled trial (RCT). The data presented in this chapter was gathered for a NHS-sponsored PhD project, with the aim of giving feed back to local clinical researchers and Research Ethics Committees in order to improve the process of future patients. This chapter, therefore, is structured around the idea of choice, of what participants understood of their choice to be, and to what extent they felt free to choose. This has associated implications for the ethical requirement of voluntariness in informed consent. Features of the process that they felt made the decisions more or less difficult is covered in this chapter including the variances in attitudes to the risks contingent in research involvement and the way in which information about risk was used. The roles of self-interest and altruism in deciding whether to agree to take part in research are also discussed in this chapter.

One of the ethical dilemmas facing researchers and social researchers is the most appropriate way of researching the relationship between old age and death. This chapter reviews the ethical issues that arose when developing the methodology for a one-year pilot study exploring the lives of one hundred people over the age of eighty. These ethical issues included whether older people with dementia can or should consent to research participation; whether it was right to obtain proxy consent from carers; how the ethical issues that emerge were addressed and resolved through a Research Ethics Committee (REC); and how the researchers dealt with ethical issues as they arose within the research interaction. The research project discussed in this chapter aimed to explore the issues of old age and death from the perspective of older people. By listening to the accounts and narratives of older people, the chapter aims to gain a better understanding of their involvement in key decisions made about their lives by health and social care professionals. While older people were the focus of this study, they were also actively involved in the project advisory group, helping researchers to plan and fine-tune the research methodology.

Increasing participation of people with intellectual disability (ID) is necessary for inclusive, ethical research that reduces persistent disparities in representation. However, many adults with ID have guardians, who must consent to research involvement. Researchers have found that guardians are less likely to provide consent than the person with ID, often resulting in lower participation. Institutional Review Board (IRB) members also have been found to hold very cautious views regarding research participation compared to the views of people with ID or their guardians. This chapter reviews issues that emerge because of differing views of research participation held by IRB members, guardians, and people with ID that may unnecessarily limit the participation of people with ID in research. The research literature on these barriers is summarized along with the authors’ own experiences with alternative participatory strategies that have the potential to increase both self-determination and participation in research for people with ID.