Samia Hurst

Background Informed consent is one of the key principles of conducting research involving humans. When research participants give consent, they perform an act in which they utter, write or otherwise provide an authorisation to somebody to do something. This paper proposes a new understanding of the informed consent as a compositional act. This conceptualisation departs from a modular conceptualisation of informed consent procedures. Methods This paper is a conceptual analysis that explores what consent is and what it does or does not do. It presents a framework that explores the basic elements of consent and breaks it down into its component parts. It analyses the consent act by first identifying its basic elements, namely: a) data subjects or legal representative that provides the authorisation of consent; b) a specific thing that is being consented to; and c) specific agent(s) to whom the consent is given. Results This paper presents a framework that explores the basic elements of consent and breaks it down into its component parts. It goes beyond only providing choices to potential research participants; it explains the rationale of those choices or consenting acts that are taking place when speaking or writing an authorisation to do something to somebody. Conclusions We argue that by clearly differentiating the goals, the procedures of implementation, and what is being done or undone when one consent, one can better face the challenges of contemporary data-intensive biomedical research, particularly regarding the retention and use of data. Conceptualising consent as a compositional act enhances more efficient communication and accountability and, therefore, could enable more trustworthy acts of consent in biomedical science.

The recent increased prevalence of diseases related to unhealthy lifestyles raises difficulties for healthcare insurance systems traditionally based on the principles of risk-management, solidarity, and selective altruism: since these diseases are, to some extent, predictable and avoidable, patients seem to bear some responsibility for their condition and may not deserve full access to social medical services. Here, we investigate with objective criteria to what extent it is warranted to hold patients responsible for their illness and to sanction them accordingly. We ground our analysis on a series of minimal conditions for ‘practical’ and for ‘moral’ responsibility attribution. By applying these criteria consistently, we highlight that individual responsibility applies to risk-taking life choices rather than stigmatized sickness. We explain that responsibility is a matter of degree, that it varies across life-history, and can be affected by factors beyond the patients’ grasp. We point out that scientific knowledge about the effect of these factors generates responsibilities for other parties such as public health agencies and private industry. The upshot of our analysis is that health policies targeting the ‘liable’ undeserving sick are mostly unwarranted, and tend to increase unequal treatment of already vulnerable groups: the unlucky sick.

La cobertura universal de salud está en el centro de la acción actual para fortalecer los sistemas de salud y mejorar el nivel y la distribución de la salud y los servicios de salud. Este documento es el informe fi nal del Grupo Consultivo de la OMS sobre la Equidad y Cobertura Universal de Salud. Aquí se abordan los temas clave de la justicia (fairness) y la equidad que surgen en el camino hacia la cobertura universal de salud. Por lo tanto, el informe es pertinente para cada agente que infl uye en ese camino y en particular para los gobiernos, ya que se encargan de supervisar y guiar el progreso hacia la cobertura universal de salud.

Applying equity to health care is difficult and it is especially challenging when applied to cases that involve urgent military medicine care under resource scarcity. Part of the difficulty centers on the concept of equity itself. It is not clear what the best concept of equity applicable to medical care would be, or that there should be only one, or the same ones, across all levels of military health care. Despite the fact that equity is a key concern in health care, particularly in the age of the COVID-19 pandemic, it may be that there is no single theory of justice that would be most justified for military physicians to use. This paper examines whether a hybrid position of equity might be both theoretically robust and applicable in practice. After briefly introducing the discussion, we outline four major philosophical definitions of equity – (1) Egalitarianism, (2) Prioritarianism, (3) Desertism, and (4) Sufficientism. We then report empirical findings suggesting that a practice-based hybrid concept of equity is used by physicians within the practice of micro-allocation. Our findings will shed lights on ethical justifications and reasoning which should guide medical rules for military and humanitarian health care providers.

In an international survey of rationing we have found that European physicians encounter scarcity-related ethical difficulties, and are dissatified with the resolution of many of these cases. Here we further examine survey results to explore whether ethics support services would be potentially useful in addressing scarcity related ethical dilemmas. Results indicate that while the type of help offered by ethics support services was considered helpful by physicians, they rarely referred difficulties regarding scarcity to ethics consultation. We propose that ethics consultants could assist physicians by making the process less difficult, and by contributing to decisions being more ethically justifiable. Expertise in bringing considerations of justice to bear on real cases could also be useful in recognising an unjust limit, as opposed to a merely frustrating limit. Though these situations are unlikely to be among the most frequently referred to ethics support services, ethics consultants should be prepared to address them

Background: Ethics support services are growing in Europe to help doctors in dealing with ethical difficulties. Currently, insufficient attention has been focused on the experiences of doctors who have faced ethical difficulties in these countries to provide an evidence base for the development of these services.Methods: A survey instrument was adapted to explore the types of ethical dilemma faced by European doctors, how they ranked the difficulty of these dilemmas, their satisfaction with the resolution of a recent ethically difficult case and the types of help they would consider useful. The questionnaire was translated and given to general internists in Norway, Switzerland, Italy and the UK.Results: Survey respondents ranged in age from 28 to 82 years, and averaged 25 years in practice. Only a minority reported having access to ethics consultation in individual cases. The ethical difficulties most often reported as being encountered were uncertain or impaired decision-making capacity , disagreement among caregivers and limitation of treatment at the end of life . The frequency of most ethical difficulties varied among countries, as did the type of issue considered most difficult. The types of help most often identified as potentially useful were professional reassurance about the decision being correct , someone capable of providing specific advice , help in weighing outcomes and clarification of the issues . Few of the types of help expected to be useful varied among countries.Conclusion: Cultural differences may indeed influence how doctors perceive ethical difficulties. The type of help needed, however, did not vary markedly. The general structure of ethics support services would not have to be radically altered to suit cultural variations among the surveyed countries

Vulnerability has been extensively discussed in medical research, but less so in health care. Thus, who the vulnerable in this domain are still remains an open question. One difficulty in their identification is due to the general criticism that vulnerability is not a property of only some, but rather of everyone. By presenting a philosophical analysis of the conditions of vulnerability ascription, we show that these seemingly irreconcilable understandings of vulnerability are not contradictory. Rather, they are interdependent: they refer to the same concept with different likelihoods of manifestation. We argue that the general vulnerability of living beings relies on their having certain types of interests. In health care, those individuals are particularly vulnerable who are more likely to have these interests unjustly considered. They should be afforded special protection in order to receive what is due to everyone, but which they are likely to fail to receive.

Growing data on the socioeconomic determinants of health pose a challenge to analysis and application of fairness in health. In Just health: meeting health needs fairly, Norman Daniels argues for a change in the population end of our thinking about just health. What about clinical care? Given our knowledge of the importance of wealth, education or social status to health, is fairness in medicine served better by continuing to avoid considering our patients’ social status in setting clinical priorities, or by attempting to equalise existing health inequalities by giving priority to the socioeconomically disadvantaged at the point of care? In this article, I argue that doctors should not attempt the latter. Granted, giving priority to low status would go some way towards compensating unjust health inequalities and the impression of being left aside in other social spaces. It would represent reverse discrimination, but could still be justified inasmuch as disadvantaged groups could be identifiable, and as long as the intent was compensation rather than retribution. However, under current circumstances such priority would risk being attributed arbitrarily, would represent a form of medical proselytising, risk leaving the worst-off with less by alienating the powerful, and require teaching doctors to act in strongly counter-cultural ways—possibly at great cost. Crucially, however, we protect both equal health and equal regard by treating all alike: priority to low status would promote the first somewhat, but at the expense of sacrificing the second

As pressures increase to contain growing healthcare expenditures, there is currently a prominent rise in the shift of healthcare costs to patients in the form of deductibles, co-pays, and co-insurance. Rising co-payments are part of a larger picture of increasing overall out-of-pocket healthcare expenditures. From 1990 to 2000, per capita out-of-pocket payments for healthcare reached $707 in the United States, and doubled in several European countries with universal health insurance, reaching $396 in Denmark, $290 in Germany, and $466 in Italy in 2000.

BackgroundImplicit prejudice can lead to disparities in treatment. The effects of specialty and experience on implicit obesity and mental illness prejudice had not been explored. The main objective was to examine how specializing in psychiatry/general medicine and years of experience moderated implicit obesity and mental illness prejudice among Swiss physicians. Secondary outcomes included examining the malleability of implicit bias via two video interventions and a condition of cognitive load, correlations of implicit bias with responses to a clinical vignette, and correlations with explicit prejudice. MethodsIn stage 1, participants completed an online questionnaire including a clinical vignette. In stage 2, implicit prejudice pre- and post- intervention was tested using a 4 × 4 between-subject design including a control group. In stage 3, explicit prejudice was tested with feeling thermometers and participants were debriefed. Participants were 133 psychiatrists and internists working in Geneva, hospital-based and private practice. Implicit prejudice was assessed using a Weight IAT and a Mental Illness IAT. Explicit feelings towards the obese and the mentally ill were measured using Feeling Thermometers. A clinical vignette assessed the level of concern felt for a fictional patient under four conditions: control, obese, depression, obese and depression. Linear regression was conducted to test for association of gender, experience, and specialty with responses to vignettes, pre-intervention IATs and explicit attitudes, and to test for association of interventions with post-intervention IATs and explicit attitudes. Reported effect sizes were computed using Cohen’s d. Two-tailed p < 0.05 was selected as the significance threshold.ResultsCompared to internists, psychiatrists showed significantly less implicit bias against mentally vs. physically ill people than internists and warmer explicit feelings towards the mentally ill. More experienced physicians displayed warmer explicit feelings towards the mentally ill and a greater level of concern for the fictional patients in the vignette than the less experienced, except when the patient was described as obese.ConclusionsSpecialty moderates both implicit and explicit mental illness prejudice. Experience moderates explicit mental illness bias and concern for patients. The effect of specialty on implicit prejudice seems to be based principally on self-selection.

The increasing availability of brain data within and outside the biomedical field, combined with the application of artificial intelligence (AI) to brain data analysis, poses a challenge for ethics and governance. We identify distinctive ethical implications of brain data acquisition and processing, and outline a multi-level governance framework. This framework is aimed at maximizing the benefits of facilitated brain data collection and further processing for science and medicine whilst minimizing risks and preventing harmful use. The framework consists of four primary areas of regulatory intervention: binding regulation, ethics and soft law, responsible innovation, and human rights.

BackgroundIn this article, we address questions regarding how people consider what they do or do not consent to and the reasons why. This article presents the findings of a citizen forum study conducted by the University of Geneva in partnership with the Geneva University Hospitals to explore the opinions and concerns of members of the public regarding predictive oncology, genetic sequencing, and cancer. MethodsThis paper presents the results of a citizen forum that included 73 participants. A research tool titled "the mechanics of consent" was designed for this study. This tool is a table encouraging participants to reflect on social and research actors, types of data, and desired levels of control while sharing different types of data with different actors. Participants’ discussion that led to the completion of each table were audio-recorded, transcribed, and analyzed using thematic analysis.ResultsThe results are a compilation of responses from the mechanics of consent tool divided into two sections; the first presents quantitative results of collective responses regarding attitudes to consent to donate their data. The second section present qualitative findings emerged from the discussion amongst participants.DiscussionChoice and control of personal data is crucial for the public to be able to decide who and how to trust. Key information to be disclosed to potential research participants shall include information about potential risks and benefits; who will be accessing and using their data; as well as assurances that their choice will be respected. Furthermore, researchers ought to make sure they are trustworthy, by acting in a competent, reliable, and honest manner. Governance systems ought to be better equipped to address ethical issues raise by the growing presence of non-traditional research actors, consent of exchanges of data via digital devices and online activity such as social media and fairness of data trading. Finally, informed consent is one of the various elements that contribute to conducting ethical research. More needs to be done to strengthen governance and ensure adequate protection of research participants, particularly to address issues related to predictive health analytics.

In the literature on medical ethics, it is generally admitted that vulnerable persons or groups deserve special attention, care or protection. One can define vulnerable persons as those having a greater likelihood of being wronged – that is, of being denied adequate satisfaction of certain legitimate claims. The conjunction of these two points entails what we call the Special Protection Thesis. It asserts that persons with a greater likelihood of being denied adequate satisfaction of their legitimate claims deserve special attention, care or protection. Such a thesis remains vague, however, as long as we do not know what legitimate claims are. This article aims at dispelling this vagueness by exploring what claims we have in relation to health care – thus fleshing out a claim-based conception of vulnerability. We argue that the Special Protection Thesis must be enriched as follows: If individual or group X has a greater likelihood of being denied adequate satisfaction of some of their legitimate claims to physical integrity, autonomy, freedom, social provision, impartial quality of government, social bases of self-respect or communal belonging, then X deserves special attention, care or protection. With this improved understanding of vulnerability, vulnerability talk in healthcare ethics can escape vagueness and serve as an adequate basis for practice

Continued confinement of those most vulnerable to COVID-19—e.g., the elderly, those with chronic diseases and other risk factors—is presented as an uncontroversial measure when planning exit strategies from lockdown measures. Policies for deconfinement assume that these persons will remain confined even when others will not. This, however, could last quite a long time, and for some this could mean that they will remain in confinement for the rest of their lives.In a policy brief on ethical, legal, and social issues of transition strategies, the Swiss national COVID-19 science task force stated that:Specific interventions should target the risks associated with isolation...

Background Decisions regarding Cardio-Pulmonary Resuscitation (CPR) and Do Not Attempt Resuscitation (DNAR) orders remain demanding, as does including patients in the process. Objectives To explore physicians’ justification for CPR/DNAR orders and decisions regarding patient inclusion, as well as their reports of how they initiated discussions with patients. Methods We administered a face-to-face survey to residents in charge of 206 patients including DNAR and CPR orders, with or without patient inclusion. Results Justifications were provided for 59% of DNAR orders and included severe comorbidity, patients and families’ resuscitation preferences, patients’ age, or poor prognosis or quality of life. Reasons to include patients in CPR/DNAR decisions were provided in 96% and 84% of cases, and were based on respect for autonomy, clinical assessment of the situation as not too severe, and the view that such inclusion was required. Reasons for not including patients were offered in 84% of cases for CPR and in 70% for DNAR. They included absent decision-making capacity, a clinical situation viewed as good (CPR) or offering little hope of recovery (DNAR), barriers to communication, or concern that discussions could be emotionally difficult or superfluous. Decisions made earlier in the patient's management were infrequently viewed as requiring revision. Residents reported a variety of introductions to discussions with patients. Conclusions These results provide better understanding of reasons for CPR/DNAR decisions, reasons for patient inclusion or lack thereof, and ways in which such inclusion is initiated. They also point to potential side-effects of implementing CPR/DNAR recommendations without in-depth and practical training. This should be part of a regular audit and follow-up process for such recommendations.

The Global Burden of Disease Study is one of the largest-scale research collaborations in global health, producing critical data for researchers, policy-makers, and health workers about more than 350 diseases, injuries, and risk factors. Such an undertaking is, of course, extremely complex from an empirical perspective. But it also raises complex ethical and philosophical questions. In this volume, a group of leading philosophers, economists, epidemiologists, and policy scholars identify and discuss these philosophical questions. Better appreciating the philosophical dimensions of a study like the GBD can make possible a more sophisticated interpretation of its results, and it can improve epidemiological studies in the future, so that they are better suited to produce results that help us to improve global health.

Background Although it is the moral duty of physicians to protect vulnerable patients, there are no data on how vulnerability is perceived in clinical practice. This study explores how physicians classify someone as “vulnerable”. Method Thirty-three physicians were initially questioned about resource allocation problems in their work. The results of these interviews were examined with qualitative study software to identify characteristics associated with vulnerability in patients. Data were conceptualized, classified and cross-linked to highlight the major determinants of vulnerability. The findings revealed the principal factors that make patients vulnerable in clinical practice, according to our definition of vulnerability: the likelihood of having one’s interests unjustly considered. Results Vulnerability can arise as a result of a mismatch between the characteristics of patients and physicians, the healthcare system, the treatment, or the communication between physicians and patients. Vulnerability appears as a gap between a patient’s needs and the means intended to meet them. Vulnerability can further be the result of doing too little or too much for patients. This result suggests that structures provided by healthcare systems are not as differentiated as they should be to cover all situations. Our initial definition of vulnerability was illustrated and supported by our results, showing that it encompasses all factors involved, not solely personal characteristics, indicating the need for a more pragmatic approach for use in clinical practice. Conclusion Vulnerability is not due to a single factor but appears under certain circumstances when there is a discrepancy between a patient’s interests and the care provided, despite existing compensation systems.

Background Implicit biases are present in the general population and among professionals in various domains, where they can lead to discrimination. Many interventions are used to reduce implicit bias. However, uncertainties remain as to their effectiveness. Methods We conducted a systematic review by searching ERIC, PUBMED and PSYCHINFO for peer-reviewed studies conducted on adults between May 2005 and April 2015, testing interventions designed to reduce implicit bias, with results measured using the Implicit Association Test (IAT) or sufficiently similar methods. Results 30 articles were identified as eligible. Some techniques, such as engaging with others’ perspective, appear unfruitful, at least in short term implicit bias reduction, while other techniques, such as exposure to counterstereotypical exemplars, are more promising. Robust data is lacking for many of these interventions. Conclusions Caution is thus advised when it comes to programs aiming at reducing biases. This does not weaken the case for implementing widespread structural and institutional changes that are multiply justified.

In Switzerland, people can be granted access to assisted suicide on condition that the person whose wish is to die performs the fatal act, that he has his decisional capacity and that the assisting person’s conduct is not selfishly motivated. No restrictions relating to the ground of suffering are mentioned in the act. Existential suffering as a reason for wanting to die, however, gives raise to controversial issues. Moreover, existential suffering lacks definition and no consensus exists on how to evaluate and manage it. This study explores the perspectives of care professionals and volunteers from a “right-to-die organization” on existential suffering as a motive for assisted suicide requests. A qualitative study based on face-to-face interviews was conducted with twenty-six participants: palliative care and primary care providers as well as EXIT right-to-die organization volunteers. Elements from the grounded theory approach were used. The twenty-six participants described existential suffering in a multiplicity of individual ways. In total, sixty-three stories were recounted. Their representations were grouped into eight categories: physical decline and its consequences, loneliness, fear of the future, life is over, loss of social significance, loss of hope for a better future, being a financial burden and loss of pleasurable activities. According to all participants, suffering coming from the loss of self-identity was always linked to physical decline, as if one’s image completely defined someone’s identity. Society’s perception of old people and vulnerable people were also often questioned. Another interesting point was that only four stories referring to a “pure” existential suffering were found. This suffering was related to a feeling that life has come to an end, without identification of any other related restriction or suffering. Existential suffering is multifaceted. Legislators and right-to-die organisations have to address the question of what make a AS acceptable. The plurality of existential suffering implies the need of a very personalized care. A better understanding of what it is made of could provide a “toolbox” to people concerned by these requests, helping them to explore it in order to offer suffering people a wider range of alternatives.