European Electronic Personal Health Records initiatives and vulnerable migrants: A need for greater ethical, legal and social safeguards.

The effective collection and management of personal data of rapidly migrating populations is important for ensuring adequate healthcare and monitoring of a displaced peoples' health status. With developments in ICT data sharing capabilities, electronic personal health records (ePHRs) are increasingly replacing less transportable paper records. ePHRs offer further advantages of improving accuracy and completeness of information and seem tailored for rapidly displaced and mobile populations. Various emerging initiatives in Europe are seeking to develop migrant-centric ePHR responses. This paper highlights their importance and benefits, but also identifies a number of significant ethical, legal and social issues (ELSI) and challenges to their design and implementation, regarding (1) the kind of information that should be stored, (2) who should have access to information, and (3) potential misuse of information. These challenges need to be urgently addressed to make possible the beneficial use of ePHRs for vulnerable migrants in Europe.

Naturalizing Responsibility.

In the contemporary debate on the use of the neurosciences in ethics and law, numerous arguments have been bandied about among scientists and philosophers looking to uphold or reject the reliability and validity of scientific findings obtained by brain imaging technologies. Among the most vexing questions is, Can we trust that technology? One point of disagreement is whether brain scans offer a window through which to observe the functioning of the mind, in such a way as to enable lawyers, judges, physicians, and lawmakers to detect anomalies in brain function that may account for criminal unconscious behavior. Those who stand behind brain imaging believe that this can indeed be achieved, whereas those in opposition stress that brain scans are highly open to interpretation and that the data they provide is insufficient to establish causal connections. The question essentially comes down to whether technology can reliably be used to determine the intentions of the individual, thus establishing mens rea, for example, and hence responsibility. This article focuses on the latter notion and explores whether we can rely on the neurosciences to shed light on a complex form of moral and legal reasoning, as well as the role of the neurosciences in reawakening a philosophical and legal interest in trying to set responsibility on an empirical basis.

[Diagnosing Alzheimer's disease: from research to clinical practice and ethics]. / Malattia di Alzheimer: la diagnosi tra ricerca, prassi clinica ed etica.

In 2011, the so-called Dubois criteria introduced the use of biomarkers in research (in particular, brain amyloid positron emission tomography imaging and the cerebrospinal fluid levels of tau/fosfo-tau and beta-amyloid 1-42) for the early or preclinical diagnosis of Alzheimer's disease. Even so, we are looking at an increased use of these markers in clinical practice. In the 1960s, Alzheimer's disease was considered a rare form of presenile dementia, but gradually it has been recognized as the prevalent form of old-age dementia. As a consequence, what was once regarded as an inevitable outcome of old age is now recognized as a true disease. Several factors contributed to this paradigm shift, in particular a longer lifespan, new techniques of in vivo study of the central nervous system, and the pressure exerted by the pharmaceutical industry and patient groups. The current lack of disease-modifying therapies and the high incidence of mild cognitive impairment, which is a risk factor for dementia, raise a series of clinical ethical problems ranging from how diagnosis is communicated to how resources are used. This article offers a conceptual scheme through which these issues can be addressed.

Persistent vegetative state: an ethical reappraisal.

New knowledge from scientific research on vegetative state (VS) and its consequences in clinical practice are reviewed. The ambiguity of the concept of consciousness and the difficult issue of its moral significance are then examined. The Authors stress the need for longitudinal prognostic studies, the promotion of an expert widespread use of standardized behavioural scales, and recommend that the ethical debate about VS rely upon the widest consensus of the scientific community.

Science Runs and the Debate Brakes: Somatic Gene-Editing as a New Tool for Gender-Specific Medicine in Alzheimer's Disease.

Gender-specific medicine is a discipline that studies the influence of sex and gender on physiology, pathophysiology, and diseases. One example in light of how a genetic-based disease among other diseases, that impact on sex, can be represented by the risk of developing dementia or Alzheimer's disease. The question that comes into focus is whether gene-editing can represent a new line of investigation to be explored in the development of personalized, gender-specific medicine that guarantees gender equity in health policies. This article aims to discuss the relevance of adopting a gender-specific focus on gene-editing research, considered as a way of contributing to the advance of medicine's understanding, treatment, and prevention of dementia, particularly Alzheimer's disease. The development or improvement of cures could take advantage of the knowledge of the gender diversity in order to ascertain and develop differential interventions also at the genetic level between women and men, and this deserves special attention and deep ethical reflection.

Ethical sharing of health data in online platforms - which values should be considered?

Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology (ICT) platforms devoted to the collection of personal health and genomic data. However, the sensitive and personal nature of health data poses ethical challenges when data is disclosed and shared even if for scientific research purposes.With this in mind, the Science and Values Working Group of the COST Action CHIP ME 'Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives' (IS 1303) identified six core values they considered to be essential for the ethical sharing of health data using ICT platforms. We believe that using this ethical framework will promote respectful scientific practices in order to maintain individuals' trust in research.We use these values to analyse five ICT platforms and explore how emerging data sharing platforms are reconfiguring the data sharing experience from a range of perspectives. We discuss which types of values, rights and responsibilities they entail and enshrine within their philosophy or outlook on what it means to share personal health information. Through this discussion we address issues of the design and the development process of personal health data and patient-oriented infrastructures, as well as new forms of technologically-mediated empowerment.

[Conscience clause in end-of-life care.] / Clausola di coscienza e cura nell'assistenza al fine vita.

The article proposes a critical reflection on issues that appeal to the conscience clause as part of end of life care can produce and what can guarantee freedom of conscience, self-determination of those involved and respect for the dignity of the sick person. After a philosophical and normative analysis, the article is organized on the basis of two important documents for discussion: a position paper of Società Italiana di Anestesia Analgesia Rianimazione e Terapia Intensiva (SIAARTI) signed by several scientific societies "Grandi insufficienze d'organo end stage: cure intensive o cure palliative?" and the Design of Law currently being debated "Norme in materia di consenso informato e di disposizioni anticipate di trattamento". In particular, the conscience clause has been discussed in the light of advance care planning (ACP), which represents the instrument to guarantee the shared planning of care and the shared-decision making. In this context, recourse to the clause of conscience brings out critical ethical and deontological issues that the article discusses, using the position paper SIAARTI and the text of law currently being debated, both built on the assumptions of a shared care relationship, where patient has a key-role in medical decisions.

Corpo e property rights: limiti e criticità nel bilanciamento tra interessi individuali e collettivi / Cuerpo y derecho de propiedad: problemas y límites en el balance entre intereses individuales y colectivos / Cos i drets de propietat: límits i assumptes crítics en el balanç entre interessos individuals i col·lectius / Body and property rights: critical issues and limits in the balance between individual and collective interests

Questa analisi prende in esame le principali criticità che nell'attuale dibattito etico e giusfilosofico sono connesse al processo di giustificazione e qualificazione del diritto di proprietà del corpo e delle sue parti, nella tensione tra interessi individuali e interessi collettivi. Le difficoltà risiedono nel considerare proprietà del soggetto quelle parti del corpo, come i campioni biologici, che possono essere ritenute espressione dell'identità biologica del soggetto dal quale provengono, in quanto parti non «autonome o riproducibili», e adottando il modello proprietario, per cui il campione biologico una volta separato dal corpo viene visto come un bene mobile e quindi oggetto di proprietà alla stregua di qualsiasi altro bene, diventa ancor più problematico qualificare la relazione tra corpo, diritto e proprietà dal punto di vista ontologico e normativo. Ciò ha determinato l'esigenza di ripensare concettualmente la definizione dello statuto etico-giuridico del corpo umano e della proprietà delle sue parti, la cui discussione è divenuta imprescindibile nel dibattito contemporaneo

Este análisis reflexiona sobre cómo el debate contemporáneo vinculado a los campos de la ética y de la filosofía del derecho ha abordado la problemática de justificar y calificar el derecho a reclamar un interés de propiedad del propio cuerpo y de sus partes. Al abordar este problema, pretendo destacar la tensión que existe entre los derechos individuales y colectivos y el desafío que supone tratar muestras biológicas como propiedad: puesto que dichos tejidos no pueden reproducirse independientemente del individuo del que provienen, y por lo tanto están estrechamente relacionados con la identidad biológica del individuo, así que resulta complejo usarlos como cualquier otra propiedad personal, o «movible». Esto hace necesario elaborar una ontología de la relación entre el cuerpo y la propiedad, a fin de comprender si esta relación apoya normativamente la noción de un derecho de propiedad del cuerpo, repensando así el marco legal y ético del cuerpo humano y sus partes como sujeto de propiedad

Aquest anàlisi reflexiona sobre com el debat contemporani vinculat als camps de l'ètica i de la filosofia del dret ha abordat la problemàtica de com justificar i qualificar el dret a reclamar un interès de propietat del propi cos i de les seves parts. Al tractar aquest problema, pretenc destacar la tensió existent entre els drets individuals i col·lectius i el desafiament que suposa tractar mostres biològiques com a propietat: ja que aquests teixits no poden reproduir-se independentment de l'individu del que provenen, i per tant estan estretament relacionats amb la identitat biològica de l'individu, així que resulta complex fer-los servir com a qualsevol altra propietat personal, o «movible». Aquest fet fa necessari elaborar una ontologia de la relació entre el cos i la propietat, amb la finalitat de comprendre si aquesta relació dóna suport normativament a la noció d'un dret de propietat del cos, repensant així el marc legal i ètic del cos humà i de les seves parts com a subjectes de propietat

This analysis looks at the way the contemporary debate in ethics and legal philosophy has addressed the problem of justifying and qualifying the right to claim a property interest in the body and its parts. In treating this problem I highlight the tension between individual and collective rights and the challenge of treating something like biological samples as property: since such tissue cannot be reproduced independently of the individual from which it comes, and so is closely bound up with the individual's biological identity, there seems to be something amiss in the idea of using it like any other piece of personal property, or «movable». This makes it necessary to work out the ontology of the relation between the body and property, so as to understand whether this relation normatively supports the notion of a property right in the body, thus rethinking the legal and ethical status of the human body and its parts as subject to ownership