BackgroundDespite the increased prevalence of bioethics research that seeks to use empirical data to answer normative research questions, there is no consensus as to what an appropriate methodology for this would be. This review aims to search the literature, present and critically discuss published Empirical Bioethics methodologies.MethodsMedLine, Web of Science and Google Scholar were searched between 15/02/12 and 16/06/13 to find relevant papers. These were abstract reviewed independently by two reviewers with papers meeting the inclusion criteria subjected to data extraction.Results33 publications (32 papers and one book chapter) were included which contained 32 distinct methodologies. The majority of these methodologies (n = 22) can be classed as either dialogical or consultative, and these represent two extreme ‘poles’ of methodological orientation. Consideration of these results provoked three central questions that are central to the planning of an empirical bioethics study, and revolve around how a normative conclusion can be justified, the analytic process through which that conclusion is reached, and the kind of conclusion that is sought.ConclusionWhen considering which methodology or research methods to adopt in any particular study, researchers need to think carefully about the nature of the claims they wish to generate through their analyses, and how these claims align with the aims of the research. Whilst there are superficial similarities in the ways that identical research methods are made use of, the different meta-ethical and epistemological commitments that undergird the range of methodological approaches adopted rehearse many of the central foundational disagreements that play out within moral philosophy and bioethical analysis more broadly. There is little common ground that transcends these disagreements, and we argue that this is likely to present a challenge for the legitimacy of the bioethical enterprise. We conclude, however, that this heterogeneity ought to be welcomed, but urge those involved in the field to engage meaningfully and explicitly with questions concerning what kinds of moral claim they want to be able to make, about normative justification and the methodological process, and about the coherence of these components within their work.
Recent judgments in England and Wales have confirmed and extended the High Court's inherent jurisdiction to make declarations about interventions into the lives of 'vulnerable', rather than simply 'mentally incapacitated' adults. We argue that this shift is problematic because of the ways that the 'vulnerable adult' has been constructed in order to justify such interventions. The accounts of vulnerability drawn upon in the constructive process highlight the person's inherent characteristics and/or the circumstances within which that person might be denied the ability to make a free choice. Such an approach parallels the public policy protection of 'vulnerable adults' from abuse in care services and the statutory protection of 'vulnerable witnesses' in the criminal justice system, and is built on an external and objective assessment of being 'at risk', rather than an understanding of the subjective experience of being vulnerable. We argue that this imbalance might act to disempower the 'vulnerable adult' by reducing that person's life to a series of risk factors that fail, first, to place him/her at the heart of the decision to intervene, and, secondly, to engage adequately with the experiences through which that person ascribes meaning to his/her life.
In England and Wales, the Mental Capacity Act 2005 (MCA) provides a new legal framework to regulate substitute decision-making relating to the welfare of adults who lack the capacity to make one or more autonomous decisions about their care and support. Any substitute decision made on behalf of an adult lacking capacity must be in his/her 'best interests'. However, the value of adopting established principles and procedures for substitute decision-making in practice is uncertain, and little is known about the legal or ethical dynamics of social care support, including the day-to-day residential support provided to adults with intellectual disabilities (ID). Methods This paper reports a qualitative, grounded theory analysis of 21 interviews with support workers working in residential care homes for adults with ID, and observations of care practices. Results In contrast to the narrow legal responsibilities placed upon them, it is argued that support workers interpret substitute decision-making within a broad moral account of their care role, orientating their support towards helping residents to live 'a life like ours'. In so doing, support workers describe how they draw on their own values and life experiences to shape the substitute decisions that they make on behalf of residents. Conclusions Support workers' accounts reveal clear discrepancies between the legal regulation of substitute decision-making and the ways that these support workers make sense of their work. Such discrepancies have implications both for the implementation of the MCA, and for the role of support workers' values in the conceptualisation and delivery of 'good' care.
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