DOI: 10.5064/f66qrsdr
title: Data for: An empirically informed analysis of the ethical issues surrounding split liver transplantation in the United Kingdom

description: &lt;b&gt;This is an &lt;a href="https://qdr.syr.edu/ati"&gt;Annotation for Transparent Inquiry (ATI)&lt;/a&gt; data project. &lt;/b&gt; &lt;h3&gt;The annotated article can be viewed on the &lt;a href="https://www.cambridge.org/core/journals/cambridge-quarterly-of-healthcare-ethics/article/an-empirically-informed-analysis-of-the-ethical-issues-surrounding-split-liver-transplantation-in-the-united-kingdom/5642AEED588AE562B8D72A94A7163F34/core-reader#annotations:group:zvEVDE2R" &gt;publisher's website&lt;/a&gt;. &lt;h3/&gt;

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&lt;p&gt;This manuscript was written as part of an ‘empirical bioethics’ project on the ethics of split liver transplantation. Empirical bioethics is a relatively new approach to bioethical enquiry, whereby empirical data (often qualitative, gathered via interviews or focus groups) is combined with a philosophical ethical analysis. Conventional, philosophical bioethics has been subject to some criticism on the grounds that it is empirically-starved, and therefore lacks ability to address nuanced ethical issues as they manifest in practice. Whether these criticisms are entirely fair is debatable, but empirical bioethics has arisen as a response. The role of empirical data in bioethical analysis can be complex because it tends to describe how things are, whereas normative bioethics makes claims about how things should be. The purpose of empirical data in this manuscript was to highlight some of the ethical issues that arise in relation to split liver transplantation, and to feed ideas from those who experience these ethical issues into a brief subsequent ethical analysis.&lt;/p&gt;&lt;p&gt;The evidence-base for this manuscript was existing medical literature on split liver transplantation, and – most significantly in this manuscript – qualitative interviews conducted with liver patients and staff working in transplantation. These participants were identified by the research team as key stakeholders in the practice of split liver transplantation.&lt;/p&gt;
description: &lt;h3&gt;Data Generation&lt;/h3&gt;
&lt;p&gt;Medical literature was searched to provide data on the risks and benefits of split liver transplantation, some of known ethical issues, as well as the more general situation regarding liver transplantation (e.g. waiting times). This manuscript was published in a ‘Bioethics beyond borders’ special edition of the journal, so there was a need to situate the ethical issue within the UK context.&lt;/p&gt; 
&lt;p&gt;Qualitative data were gathered for a specific purpose - to inform an ethical commentary on split liver transplantation – and the requirements of this purpose entailed that specific types of data were sought. We wanted to know about participants’ experiences of liver transplantation, but also their views on the rights and wrongs of splitting livers, and the types of ethical reasoning that they use. Semi-structured interviews were used, the topic guide for which was based upon ethical issues in the literature and in consultation with clinical members of the research team. For example, one of the known ethical issues in split liver transplantation is the slightly increased risk to the adult recipient of a split liver graft, so some questions focussed on patient perceptions of the acceptability of increasing risk for adults in order to benefit children. Within the interviews, the researcher deliberately (albeit gently) challenged and questioned views, in order to gain insight not just into the views themselves, but also the reasoning behind them. All participants gave informed consent prior to participation in interviews, and were informed that their words may be used in publications and reports resulting from the research. &lt;/p&gt;
&lt;p&gt;We decided when designing the project that it was important to obtain a range of perspectives and experiences. We therefore interviewed patients who were pre- and post-transplant, and patients who had received split or whole livers. We also interviewed a range of transplant staff, including surgeons and clinicians from both adult and paediatric liver transplant units. We did not interview paediatric recipients, family members of recipients, or patients for whom participation in an interview would have proven too burdensome (as determined by clinical staff during participant selection). Including these groups of participants could have provided valuable different perspectives, but there were good reasons to exclude them. For example, including patients who remain seriously ill following a liver transplant (particularly if they had experienced severe complications related to receiving a split-liver) could have provided an interesting perspective regarding the additional risks involved, but nevertheless it would not be ethical to ask people to participate in an overly burdensome research encounter.&lt;/p&gt; 
&lt;p&gt;Given the nature of the interview data, it is important to be clear that our empirical claims are not intended to be applied far beyond our participants. Our data inform our subsequent discussion, and we use them to explore lines of ethical argument, but this does not mean that our discussion considers all ethical issues experienced within split liver transplantation, or even the most common ones.&lt;/p&gt; 
&lt;h3&gt;Data Analysis&lt;/h3&gt;

&lt;p&gt;Interview data were analysed using a semi-directed content analysis. Because of the purpose of data collection – to inform an ethical analysis –, and because the data was coded and analysed by a bioethicist, the codes used throughout the analysis tended to reflect, or be tied relatively closely to, concepts that were plainly ethical in nature. For example, there are several codes related to different aspects of risk, different conceptions of equality/equity and emotions versus reasons. Coding was initially open to the extent that predetermined codes were not simply applied from the top-down, but it was unsurprising that ethical codes were most prevalent, given that they aligned with the design of the topic guide, and ensured that the results of the analysis would be of utility to an ethical discussion. &lt;/p&gt;
&lt;h3&gt;Logic of annotation&lt;/h3&gt;

&lt;p&gt;Due to the nature of this manuscript, I believed it would be most useful to focus annotations primarily on claims about the views of the study participants, as these form the basis of the novel empirical foundation for the ethical analysis. These claims are fed into the subsequent ethical discussion, so it seems important that they are transparent. Within the annotations I have tried to include additional context to the quoted text, by providing longer excerpts than those within the original manuscript.&lt;/p&gt;
&lt;p&gt;Ideally it would have been possible to make full interview transcripts available, but for ethical reasons we have been unable to do this. Participants were informed before taking part in the research that their words might be used within publications, but not that their full transcripts would be made available. Given the small liver transplant population in the UK, and particularly given the small number of staff working within liver transplantation, it would have been difficult to be confident that even fully anonymised transcripts were sufficiently non-identifiable. &lt;/p&gt;
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