Empathy, social media and directed altruistic living donation

In this paper we explore some of the ethical dimensions of using social media to increase the number of living kidney donors. Social media provides a platform for changing non-identifiable ‘statistical victims’ into ‘real people’ with whom we can identify and feel empathy: the so-called ‘identifiable victim effect’, which prompts charitable action. We examine three approaches to promoting kidney donation using social media which could take advantages of the identifiable victim effect: i) institutionally organised campaigns based on historical cases aimed at promoting non-directed altruistic donation; ii) personal-case based campaigns organised by individuals aimed at promoting themselves/or someone with whom they are in a relationship as a recipient of directed donation; iii) institutionally organised personal-case based campaigns aimed at promoting specific recipients for directed donation. We will highlight the key ethical issues raised by these approaches, and will argue that the third option, despite raising ethical concerns, is preferable to the other two

Ethical values and social care robots for older people : an international qualitative study

Values such as respect for autonomy, safety, enablement, independence, privacy and social connectedness should be reflected in the design of social robots. The same values should affect the process by which robots are introduced into the homes of old people to support independent living. These values may, however, be in tension. We explored what potential users thought about these values, and how the tensions between them could be resolved. With the help of partners in the ACCOMPANY project, 21 focus groups (123 participants) were convened in France, the Netherlands and the UK. These groups consisted of: (i) older people, (ii) informal carers and (iii) formal carers of older people. The participants were asked to discuss scenarios in which there is a conflict between older people and others over how a robot should be used, these conflicts reflecting tensions between values. Participants favoured compromise, persuasion and negotiation as a means of reaching agreement. Roles and related role-norms for the robot were thought relevant to resolving tensions, as were hypothetical agreements between users and robot-providers before the robot is introduced into the home. Participants' understanding of each of the values – autonomy, safety, enablement, independence, privacy and social connectedness – is reported. Participants tended to agree that autonomy often has priority over the other values, with the exception in certain cases of safety. The second part of the paper discusses how the values could be incorporated into the design of social robots and operationalised in line with the views expressed by the participants

Ethical challenges experienced by UK military medical personnel deployed to Sierra Leone (operation GRITROCK) during the 2014–2015 Ebola outbreak : a qualitative study

Background: As part of its response to the 2014 Ebola outbreak in west Africa, the United Kingdom (UK) government established an Ebola treatment unit in Sierra Leone, staffed by military personnel. Little is known about the ethical challenges experienced by military medical staff on humanitarian deployment. We designed a qualitative study to explore this further with those who worked in the treatment unit. Method: Semi-structured, face-to-face and telephone interviews were conducted with 20 UK military personnel deployed between October 2014 and April 2015 in one of three roles in the Ebola treatment unit: clinician; nursing and nursing assistant; and other medical support work, including infection control and laboratory and mortuary services. Results: Many participants reported feeling ethically motivated to volunteer for deployment, but for some personal interests were also a consideration. A small minority had negative feelings towards the deployment, others felt that this deployment like any other was part of military service. Almost all had initial concerns about personal safety but were reassured by their pre-deployment 'drills and skills', and personal protective equipment. Risk perceptions were related to perceptions about military service. Efforts to minimise infection risk were perceived to have made good patient care more difficult. Significantly, some thought the humanitarian nature of the mission justified tolerating greater risks to staff. Trust in the military institution and colleagues was expressed; many participants referred to the ethical obligation within the chain of command to protect those under their command. Participants expected resources to be overwhelmed and ‘empty beds’ presented a significant and pervasive ethical challenge. Most thought more patients could and should have been treated. Points of reference for participants’ ethical values were: previous deployment experience; previous UK/National Health Service experience; professional ethics; and, distinctly military values (that might not be shared with non-military workers). Conclusion: We report the first systematic exploration of the ethical challenges face by a Western medical military in the international response to the first major Ebola outbreak. We offer unique insights into the military healthcare workers’ experiences of humanitarian deployment. Many participants expressed motivations that gave them common purpose with civilian volunteers

Activism, bioethics and academic research

This article sketches a taxonomy of the activities in which bioethics academics engage, including activities that may make their own research more impactful, from little or no engagement outside academia to activism or extreme activism. This taxonomy, the first of its kind, may be useful in determining what obligations bioethics academics have in relation to activism and activities that fall short of activism

Potential research participants’ use of information during the consent process : a qualitative pilot study of patients enrolled in a clinical trial

There is increasing evidence that clinical trial participants are uninformed about the trials in which they participate, raising ethical concerns regarding informed consent. The aim of this pilot study was to explore clinical trial participants’ use of consent discussions and information sheets when considering participating in clinical trials research. A qualitative, interview-based pilot study was designed in order to elicit, through dialogue, details of the reasons for participants’ use of, and preferences regarding, different modes of information provision. Semi-structured interviews were undertaken with two different groups of patients who were participants in the Reinforcement of Closure of Stoma Site trial. The first group comprised newly-consented trial participants, who had been recruited up to 72 hours before our interview; the second group comprised patients attending a follow-up clinic 12 months after joining the trial. Thirteen participants were recruited in total: three newly-consented patients, and ten follow-up patients. The study found that participants’ use of consent discussions to gain information about clinical trials was varied, and that they only minimally used information sheets after providing initial consent for the trial. Participants demonstrated varying degrees of knowledge about the trial, with some having forgotten that they were still involved in the trial. Participants reported a high level of trust in medical staff as a reason for not seeking more information about the trial. Some participants reported dissatisfaction with the timing of information provision. Some were amenable to novel ways of receiving trial information, such as web-based methods. The pilot study demonstrated the feasibility of a larger study into the provision of information to prospective clinical trial participants. The results suggest that considering alternative ways of providing information and the appropriateness of existing information provision may be acceptable to and useful for potential trial participants

Who gets the gametes? An argument for a points system for fertility patients

This paper argues that the convention of allocating donated gametes on a “first come, first served” basis should be replaced with an allocation sys-tem that takes into account more morally relevant criteria than waiting time. This conclusion was developed using an empirical bioethics method-ology, which involved a study of the views of eighteen staff members from seven UK fertility clinics, and twenty academics, policy-makers, representa-tives of patient groups, and other relevant professionals, on the allocation of donated sperm and eggs. Against these views, we consider some nu-anced ways of including criteria in a points allocation system. We argue that such a system is more ethically robust than “first come, first served”, but we acknowledge that our results suggest that a points system will meet with resistance from those working in the field. We conclude that criteria such as a patient’s age, potentially damaging substance use, and parental status should be used to allocate points and determine which patients re-ceive treatment and in what order. These and other factors should be ap-plied according to how they bear on considerations like child welfare, pa-tient welfare, and the effectiveness of the proposed treatment

Will the NHS continue to function in an influenza pandemic? A survey of healthcare workers in the West Midlands, UK

If UK healthcare services are to respond effectively to pandemic influenza, levels of absenteeism amongst healthcare workers (HCWs) must be minimised. Current estimates of the likelihood that HCWs will continue to attend work during a pandemic are subject to scientific and predictive uncertainty, yet an informed evidence base is needed if contingency plans addressing the issues of HCW absenteeism are to be prepared

Current practices in patient-reported outcome (PRO) data collection in clinical trials:a cross-sectional survey of UK trial staff and management

Objectives Patient-reported outcome measures (PROMs) collected in clinical trials should be administered in a standardised way across sites and routinely screened for avoidable missing data in order to maximise data quality/minimise risk of bias. Recent qualitative findings, however, have raised concerns about the consistency of PROM administration in UK trials. The purpose of this study was to determine the generalisability of these findings across the wider community of trial personnel. Design Online cross-sectional survey. Setting Participants were recruited from 55 UK Clinical Research Collaboration Registered Clinical Trials Units and 19 Comprehensive Local Research Networks. Participants Research nurses, data managers/coordinators, trial managers and chief/principal investigators involved in clinical trials collecting PROMs. Analysis We undertook descriptive analyses of the quantitative data and directed thematic analysis of free-text comments. Factors associated with the management of missing PRO data were explored using logistic regression. Results Survey data from 767 respondents supported the generalisability of qualitative study findings, suggesting inconsistencies in PROM administration with regard to: the level of assistance given to trial participants; the timing of PROM completion in relation to the clinical consultation; and the management of missing data. Having ≥10 years experience in a research role was significantly associated with the appropriate management of missing PROM data (OR 2.26 (95% CI 1.06 to 4.82), p=0.035). There was a consensus that more PROM guidance was needed in future trials and agreement between professional groups about the necessary components. Conclusions There are inconsistencies in the way PROMs are administered by trial staff. Such inconsistencies may reduce the quality of data and have the potential to introduce bias. There is a need for improved guidance in future trials that support trial personnel in conducting optimal PROM data collection to inform patient care

Should We Reject Donated Organs on Moral Grounds or Permit Allocation Using Non-Medical Criteria?:A Qualitative Study

Conditional and directed deceased organ donations occur when donors (or often their next of kin) attempt to influence the allocation of their donated organs. This can include asking that the organs are given to or withheld from certain types of people, or that they are given to specified individuals. Donations of these types have raised ethical concerns, and have been prohibited in many countries, including the UK. In this article we report the findings from a qualitative study involving interviews with potential donors (n = 20), potential recipients (n = 9) and transplant staff (n = 11), and use these results as a springboard for further ethical commentary. We argue that although participants favoured unconditional donation, this preference was grounded in a false distinction between ‘medical’ and ‘non-medical’ allocation criteria. Although there are good reasons to maintain organ allocation based primarily upon the existing ‘medical’ criteria, it may be premature to reject all other potential criteria as being unacceptable. Part of participants' justification for allocating organs using ‘medical’ criteria was to make the best use of available organs and avoid wasting their potential benefit, but this can also justify accepting conditional donations in some circumstances. We draw a distinction between two types of waste – absolute and relative – and argue that accepting conditional donations may offer a balance between these forms of waste