Demented patients and the quandaries of identity: setting the problem, advancing a proposal.

In the paper, after clarifying terms such as 'identity', 'self' and 'personhood', I propose an empirical account of identity based on the notion of "whole phenotype". This move allows one to claim the persistence of the individuals before and after their being affected by dementia. Furthermore, I show how this account permits us to address significant questions related to demented individuals' loss of the capacity of moral decisions.

Seeing clearly through COVID-19: current and future questions for the history and philosophy of the life sciences.

The role of a journal like HPLS during the novel coronavirus pandemic should serve as a means for scholars in different fields and professions to consider historically and critically what is happening as it unfolds. Surely it cannot tackle all the possible issues related to the pandemic, in particular to the COVID-19 pandemic, but it does have a responsibility to foster the best possible dialogue about the various issues related to the history and philosophy of the life sciences, and thus to solicit contributions from potential authors working in different parts of the world and belonging to different cultural traditions. Only a real plurality of perspectives should allow for a better, large-scale comprehension of what the COVID-19 pandemic is.

A Trust-Based Pact in Research Biobanks. From Theory to Practice.

Traditional Informed Consent is becoming increasingly inadequate, especially in the context of research biobanks. How much information is needed by patients for their consent to be truly informed? How does the quality of the information they receive match up to the quality of the information they ought to receive? How can information be conveyed fairly about future, non-predictable lines of research? To circumvent these difficulties, some scholars have proposed that current consent guidelines should be reassessed, with trust being used as a guiding principle instead of information. Here, we analyse one of these proposals, based on a Participation Pact, which is already being offered to patients at the Istituto Europeo di Oncologia, a comprehensive cancer hospital in Milan, Italy.

Oocyte cryopreservation beyond cancer: tools for ethical reflection.

PURPOSE: This article offers physicians a tool for structured ethical reflection on challenging situations surrounding oocyte cryopreservation in young healthy women. METHODS: A systematic literature review offers a comprehensive overview of the ethical debate surrounding the practice. Ethical Counseling Methodology (ECM) offers a practical approach for addressing ethical uncertainties. ECM consists of seven steps: (i) case presentation; (ii) analysis of possible implications; (iii) presentation of ethical question(s); (iv) explanation of ethical terms; (v) presentation of the ethical arguments in favor of and against the procedure; (vi) examination of the individual patient's beliefs and wishes; and (vii) conclusive summary. RESULTS: The most problematic aspects in the ethical debate include the distinction between medical and non-medical use of oocyte cryopreservation, safety and efficiency of the procedure, and marketing practices aimed at healthy women. Female empowerment and enhanced reproductive choices (granted oocyte cryopreservation is a safe and efficient technique) are presented as ethical arguments supporting the practice, while ethical reservations towards oocyte cryopreservation are based on concerns about maternal and fetal safety and wider societal implications. CONCLUSIONS: Oocyte cryopreservation is gaining popularity among healthy reproductive age women. However, despite promised benefits it also involves risks that are not always properly communicated in commercialized settings. ECM offers clinicians a tool for structured ethical analysis taking into consideration a wide range of implications, various ethical standpoints, and patients' perceptions and beliefs.

Epistocracy for online deliberative bioethics.

The suggestion that deliberative democratic approaches would suit the management of bioethical policymaking in democratic pluralistic societies has triggered what has been called the "deliberative turn" in health policy and bioethics. Most of the empirical work in this area has focused on the allocation of healthcare resources and priority setting at the local or national level. The variety of the more or less articulated theoretical efforts behind such initiatives is remarkable and has been accompanied, to date, by an overall lack of method specificity. We propose a set of methodological requirements for online deliberative procedures for bioethics. We provide a theoretical motivation for these requirements. In particular, we discuss and adapt an "epistocratic" proposal and argue that, regardless of its merits as a general political theory, a more refined version of its normative claims can generate a useful framework for the design of bioethical forums that combine maximal inclusiveness with informed and reasonable deliberation.

Libertarian paternalism and health care policy: a deliberative proposal.

Cass Sunstein and Richard Thaler have been arguing for what they named libertarian paternalism (henceforth LP). Their proposal generated extensive debate as to how and whether LP might lead down a full-blown paternalistic slippery slope. LP has the indubitable merit of having hardwired the best of the empirical psychological and sociological evidence into public and private policy making. It is unclear, though, to what extent the implementation of policies so constructed could enhance the capability for the exercise of an autonomous citizenship. Sunstein and Thaler submit it that in most of the cases in which one is confronted with a set of choices, some default option must be picked out. In those cases whoever devises the features of the set of options ought to rank them according to the moral principle of non-maleficence and possibly to that of beneficence. In this paper we argue that LP can be better implemented if there is a preliminary deliberative debate among the stakeholders that elicits their preferences, and makes it possible to rationally defend them.

The Oncohumanities training programme: Fostering a deeper engagement and integration of oncology and humanities to tackle the pressing and complex challenges of cancer care.

'Oncohumanities' is a new field of oncology and humanities which integrates a rich gamut of humanity disciplines and oncological expertise to tackle patients' real needs and priorities. To promote knowledge and awareness on this topic, we propose a training programme that will blend conceptual knowledge underpinning oncology practice with and person-centred care based on the humanisations of care, on empowerment of patients, and on respect for their diversities. Oncohumanities differs from most existing medical humanities training as it is integrated and engaged with oncology (rather than an add-on). This means that its agenda is driven by the real needs and priorities arising out of daily oncological practice. It is our hope that this new Oncohumanities programme and approach will contribute to guiding future efforts to foster a strong integrated partnership between humanities and oncology.

The value of supportive care: A systematic review of cost-effectiveness of non-pharmacological interventions for dementia.

BACKGROUND: Almost 44 million people are currently living with dementia worldwide. This number is set to increase threefold by 2050, posing a serious threat to the sustainability of healthcare systems. Overuse of antipsychotic drugs for the management of the symptoms of dementia carries negative consequences for patients while also increasing the health expenditures for society. Supportive care (SC) interventions could be considered a safer and potentially cost-saving option. In this paper we provide a systematic review of the existing evidence regarding the cost-effectiveness and cost-utility of SC interventions targeted towards persons living with dementia and their caregivers. METHODS: A systematic literature review was performed between February 2019 and December 2021 through searches of the databases PubMed (MEDLINE), Cochrane Library, CENTRAL, Embase and PsycINFO. The search strategy was based on PRISMA 2020 recommendations. We considered studies published through December 2021 with no lower date limit. We distinguished between five categories of SC strategies: cognitive therapies, physical activity, indirect strategies (organisational and environmental changes), interventions primarily targeted towards family caregivers, and multicomponent interventions. RESULTS: Of the 5,479 articles retrieved, 39 met the inclusion criteria. These studies analysed 35 SC programmes located at different stages of the dementia care pathway. Eleven studies provided evidence of high cost-effectiveness for seven interventions: two multicomponent interventions; two indirect interventions; two interventions aimed at caregivers of community-dwelling persons with dementia; one community-based cognitive stimulation and occupational programme. CONCLUSION: We find that the most promising SC strategies in terms of cost-effectiveness are multicomponent interventions (targeted towards both nursing home residents and day-care service users), indirect strategies (group living and dementia care management at home), some forms of tailored occupational therapy, together with some psychosocial interventions for caregivers of community-dwelling persons with dementia. Our results suggest that the adoption of effective SC interventions may increase the economic sustainability of dementia care.

Trusted consent and research biobanks: towards a 'new alliance' between researchers and donors.

We argue that, in the case of research biobanks, there is a need to replace the currently used informed consent with trusted consent. Accordingly, we introduce a proposal for the structure of the latter. Further, we discuss some of the issues that can be addressed effectively through our proposal. In particular, we illustrate: i) which research should be authorized by donors; ii) how to regulate access to information; iii) the fundamental role played by a Third Party Authority in assuring compliance with the reciprocal expectations and obligations of donors and scientists. Finally, we briefly analyse two issues that might represent important elements of a 'new alliance' between researchers and donors to which the trusted consent could pave the way: i) the correlations between needs and rights of the two parties, and ii) possible economic transactions.

Cystic fibrosis carrier screening in Veneto (Italy): an ethical analysis.

A recent study by Castellani et al. (JAMA 302(23):2573-2579, 2009) describes the population-level effects of the choices of individuals who underwent molecular carrier screening for cystic fibrosis (CF) in Veneto, in the northeastern part of Italy, between 1993 and 2007. We discuss some of the ethical issues raised by the policies and individual choices that are the subject of this study. In particular, (1) we discuss the ethical issues raised by the acquisition of genetic information through antenatal carrier testing; (2) we consider whether by choosing to procreate naturally these couples can harm the resulting child and/or other members of society, and what the moral implications of such harm would be; (3) we consider whether by choosing to avoid natural procreation carrier couples can harm current or future individuals affected by cystic fibrosis; (4) we discuss whether programs that make carrier testing available can be considered eugenic programs.

MitopatHs: a new logically-framed tool for visualizing multiple mitochondrial pathways.

Mitochondria are key organelles inside the cell that house a wide range of molecular pathways involved in energy metabolism, ions homeostasis, and cell death. Several databases characterize the different mitochondrial aspects and thus support basic and clinical research. Here we present MitopatHs, a web-based data set that allows navigating among the biochemical signaling pathways (PatHs) of human (H) mitochondria (Mito). MitopatHs is designed to visualize and comprehend virtually all types of pathways in two complementary ways: a logical view, where the sequence of biochemical reactions is presented as logical deductions, and an intuitive graphical visualization, which enables the examination and the analysis of each step of the pathway. MitopatHs is a manually curated, open access and collaborative tool, whose goal is to enable the visualization and comprehension of complicated molecular routes in an easy and fast way.

Why include the humanities in medical studies?

The relation between philosophy and biomedicine has been reassessed and rethought in the last few years: on the one hand, philosophy of science has paid increasing attention to actual modes of biomedical research and clinical practice; on the other, classes in philosophy, and more generally, in the humanities, have started entering medical curricula. However, the role of philosophy in medical education is not yet unanimously recognized, with situations differing significantly in various national and international contexts. In line with the tradition in Italy and other countries of reflecting on clinical methodology and with the recent initiatives at the crossroads between medicine and philosophy, this contribution aims to argue for the mutual relevance of medicine and philosophy in educational processes, and to suggest some possible forms of implementation of their interactions.

A defining analysis of the life and death dyad: paving the way for an ethical debate.

We discuss the meaning of "being alive" and "being dead." Our primary aim is to pave the way for a sound and accurate ethical debate concerning these two concepts. In particular, we analyze a metabolic approach and a genetic one and discuss the reasons for their failure to constitute a good starting point for successive debates. We argue that any ethical or social discussion of topics involving life and death must introduce cultural constructs such as, on the one hand, the concept of clinical death and, on the other hand, the concept of existence. We argue that these two cultural constructs, although consistent with biomedical knowledge, cannot be ontologically grounded in it. To conclude, we apply our findings to the case of human embryos.

Clustering humans: on biological boundaries.

We inquire into the notions of 'boundary' and 'cluster' in the fields of medical genetics, pharmacogenetics, and population genetics. First we show that the two notions are not well discussed in literature. Then we propose a promising explication of them, in which we argue that clustering is always 'property laden', that is, fundamentally dependent on decisions about the properties to be taken into account. In particular we suggest three different kinds of properties (main properties, investigating properties, and catalyzing properties) that have a role in these decisions. That is, we conclude that boundaries and clusters among humans depend on our way of considering nature. Concepts of 'race' and 'ethnic group' are discussed too, since they are the most used clusters among humans.

In Memoriam Werner Callebaut.

The article contains some recollections on Werner Callebaut highlighting his personal character and his role in the community of historians, philosophers and sociologists of the life sciences. Werner Callebaut (1952-2014) was a real European philosopher. He was the Scientific Director of the Konrad Lorenz Institute for Evolution and Cognition Research (KLI, Klosterneuburg, Austria) and the President of the International Society for the History, Philosophy, and Social Studies of Biology.