People who are unable to make decisions about participating in research rely on proxies to make a decision based on their wishes and preferences. However, patients rarely discuss their preferences about research and proxies find it challenging to determine what their wishes would be. While the process of informed consent has traditionally been the focus of research to improve consent decisions, the more conceptually complex area of what constitutes ‘good’ proxy decision-making for research has remained unexplored. Interventions are needed to (...) improve and support proxy decision-making for research but are hampered by a lack of understanding about what constitutes decision quality in this context. A global increase in conditions associated with cognitive impairment such as dementia has led to an urgent need for more research into these conditions. The COVID-19 pandemic and subsequent necessity to conduct research with large numbers of critically ill patients has made this need even more pressing. Much of the empirical research centres on the desire to improve decision accuracy, despite growing evidence that authenticity is more reflective of the aim of proxy decisions and concerns about the methodological flaws in authenticity-focused studies. Such studies also fail to take account of the impact of decision-making on proxies, or the considerable body of research on improving the quality of healthcare decisions. This paper reports a concept synthesis of the literature that was conducted to develop the first conceptualisation of ‘good’ proxy decisions about research participation. Elements of decision quality were identified across three stages of decision-making: proxy preparedness for decision-making which includes knowledge and understanding, and values clarification and preference elicitation; the role of uncertainty, decisional conflict, satisfaction and regret in the decision-making process; and preference linked outcomes and their effect. This conceptualisation provides an essential first step towards the future development of interventions to enhance the quality of proxy decision-making and ensure proxy decisions represent patients’ values and preferences. (shrink)

The decision of the High Court in Bell v Tavistock has excited considerable discussion about lawful consent for puberty-blocking drug treatment for children with gender dysphoria. The present paper draws attention to a wider question that surfaces through this case: is informed decision-making an adequate practical tool for seeking and obtaining patients’ consent for medical treatment? Informed decision-making engages the premises of the rational choice theory: that people will have well-crystallised health goals; and, if they are provided with sufficient information (...) about medical treatments, then they will be able to choose the treatment that satisfies their goals. Whilst appealing, the informed decision-making paradigm is assailed by various fallacies, which apply not only to children but also to adults. In Bell v Tavistock, the High Court seems to have recognised such fallacies, and it rejected informed decision-making as an adequate tool for consent from children with gender dysphoria. Similar considerations apply to adults in various situations. Thus, Bell v Tavistock can be seen as an attempt to refine the views on the consent that were expressed by the Supreme Court in Montgomery. It can be inferred that the Supreme Court did recognise the limitations of informed decision-making, but it did not develop this point. Further work is required to formulate an adequate model of decision-making, and Bell v Tavistock serves as a useful reminder to rethink informed decision-making as the device for consent. (shrink)

Clarifying the meaning of ethical concepts is fundamental for medical ethics. Many of the best papers in the Journal of Medical Ethics have advanced our understanding of the limits and implications of ethical concepts. This issue includes a number of papers that give us reason to reflect on the use, implications and grounding of some important ethical concepts. The concepts we use are rarely neutral. For example, those arguing against assisted dying are more likely to use terms such as ‘euthanasia’ (...) or perhaps even ‘killing’, while those arguing in favour of it might opt for ‘aid in dying’ or ‘facilitated aid in dying’. Of course, these are different concepts and do not mean the same thing, but the different associations and implications of concepts can weaken or strengthen a position. Woollard analyses the way in which the terms used in public information and discussions about breastfeeding can be morally loaded and thereby cause guilt or detract from the effectiveness of public information.1 She argues that normative concepts such as ‘harm’ or ‘dangerous’ and slogans such as ‘breast is best’ can imply moral duties or criticism when it is unhelpful and inappropriate to do so. She does this by showing how concepts such as ‘harm’ and ‘risk’, …. (shrink)

Volume 19, Issue 5, May 2019, Page 29-31.

The concept of epistemic injustice is the latest philosophical tool with which to try to theorise what goes wrong when mental health service users are not listened to by clinicians, and what goes right when they are. Is the tool adequate to the task? It is argued that, to be applicable at all, the concept needs some adjustment so that being disbelieved as a result of prejudice is one of a family of alternative necessary conditions for its application, rather than (...) a necessary condition all on its own. It is then argued that even once adjusted in this way, the concept does not fit well in the area where the biggest efforts have been made to apply it so far, namely the highly sensitive case of adult patients suffering from delusions. Indeed it does not serve the interests of service users struggling for recognition to try to apply it in this context, because there is so much more to being listened to than simply being believed. However, the concept is found to apply smoothly in many cases where the service users are children, for example, in relation to children’s testimony on the efficacy of treatment. It is suggested that further research would demonstrate the usefulness of the concept in adult cases of a similar kind. There are no data in this work. (shrink)

An increase in global violence has forced the displacement of more than 70 million people, including 26 million refugees and 3.5 asylum seekers. Refugees and asylum seekers face serious socioeconomic and healthcare barriers and are therefore particularly vulnerable to physical and mental health risks, which are sometimes exacerbated by immigration policies and local social discriminations. Calls for a strong evidence base for humanitarian action have encouraged conducting research to address the barriers and needs of refugees and asylum seekers. Given the (...) role of epigenetics factors to mediate the effect of psychological and environmental exposures, epigenetic modifications have been used as biomarkers for life adversity and disease states. Therefore, epigenetic research can be potentially beneficial to address some of the issues associated with refugees and asylum seekers. Here, we review the value of previous and ongoing epigenetic studies with traumatized populations, explore some of the ethical challenges associated with epigenetic research with refugees and asylees and offer suggestions to address or mitigate some of these challenges. Researchers have an ethical responsibility to implement strategies to minimize the harms and maximize the short and long-term benefits to refugee and asylee participants. (shrink)