Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries.

BACKGROUND: With new technologies, health data can be collected in a variety of different clinical, research, and public health contexts, and then can be used for a range of new purposes. Establishing the public's views about digital health data sharing is essential for policy makers to develop effective harmonization initiatives for digital health data governance at the European level. OBJECTIVE: This study investigated public preferences for digital health data sharing. METHODS: A discrete choice experiment survey was administered to a sample of European residents in 12 European countries (Austria, Denmark, France, Germany, Iceland, Ireland, Italy, the Netherlands, Norway, Spain, Sweden, and the United Kingdom) from August 2020 to August 2021. Respondents answered whether hypothetical situations of data sharing were acceptable for them. Each hypothetical scenario was defined by 5 attributes ("data collector," "data user," "reason for data use," "information on data sharing and consent," and "availability of review process"), which had 3 to 4 attribute levels each. A latent class model was run across the whole data set and separately for different European regions (Northern, Central, and Southern Europe). Attribute relative importance was calculated for each latent class's pooled and regional data sets. RESULTS: A total of 5015 completed surveys were analyzed. In general, the most important attribute for respondents was the availability of information and consent during health data sharing. In the latent class model, 4 classes of preference patterns were identified. While respondents in 2 classes strongly expressed their preferences for data sharing with opposing positions, respondents in the other 2 classes preferred not to share their data, but attribute levels of the situation could have had an impact on their preferences. Respondents generally found the following to be the most acceptable: a national authority or academic research project as the data user; being informed and asked to consent; and a review process for data transfer and use, or transfer only. On the other hand, collection of their data by a technological company and data use for commercial communication were the least acceptable. There was preference heterogeneity across Europe and within European regions. CONCLUSIONS: This study showed the importance of transparency in data use and oversight of health-related data sharing for European respondents. Regional and intraregional preference heterogeneity for "data collector," "data user," "reason," "type of consent," and "review" calls for governance solutions that would grant data subjects the ability to control their digital health data being shared within different contexts. These results suggest that the use of data without consent will demand weighty and exceptional reasons. An interactive and dynamic informed consent model combined with oversight mechanisms may be a solution for policy initiatives aiming to harmonize health data use across Europe.

Science, misinformation and digital technology during the Covid-19 pandemic.

Three interdependent factors are behind the current Covid-19 pandemic distorted narrative: (1) science´s culture of "publish or perish", (2) misinformation spread by traditional media and social digital media and (3) distrust of technology for tracing contacts and its privacy-related issues. In this short paper, I wish to tackle how these three factors have added up to give rise to a negative public understanding of science in times of a health crisis, such as the current Covid-19 pandemic and finally, how to confront all these problems.

How do people use 'killing', 'letting die' and related bioethical concepts? Contrasting descriptive and normative hypotheses.

Bioethicists involved in end-of-life debates routinely distinguish between 'killing' and 'letting die'. Meanwhile, previous work in cognitive science has revealed that when people characterize behaviour as either actively 'doing' or passively 'allowing', they do so not purely on descriptive grounds, but also as a function of the behaviour's perceived morality. In the present report, we extend this line of research by examining how medical students and professionals (N = 184) and laypeople (N = 122) describe physicians' behaviour in end-of-life scenarios. We show that the distinction between 'ending' a patient's life and 'allowing' it to end arises from morally motivated causal selection. That is, when a patient wishes to die, her illness is treated as the cause of death and the doctor is seen as merely allowing her life to end. In contrast, when a patient does not wish to die, the doctor's behaviour is treated as the cause of death and, consequently, the doctor is described as ending the patient's life. This effect emerged regardless of whether the doctor's behaviour was omissive (as in withholding treatment) or commissive (as in applying a lethal injection). In other words, patient consent shapes causal selection in end-of-life situations, and in turn determines whether physicians are seen as 'killing' patients, or merely as 'enabling' their death.

[The ethics of health nudges: a discussion about their acceptability in public health.] / La ética de los nudges sanitarios: una discusión sobre su aceptabilidad en salud pública.

In behavioral science, the term nudge refers to any aspect of decision architecture that predictably alters people's behavior to improve the chooser's own welfare without forbidding or significantly restricting their choices. Its promoters invoke libertarian paternalism, which means, on the one hand, that the behavior of the individual is guided without counting on his autonomy, but, on the other hand, that this form of influence does not reach the point of restricting freedom of choice when it is manifest. This paper analyzes the role of nudges in the field of health policies. A cognitive analysis of these nudges is carried out and are distinguished the clinical nudges (those that take place within the healthcare professional and patient relationship) from the public health nudges (specific to public health policies). The ethical aspects of both categories of nudge will be analyzed to point out some of their virtues and the ethical challenges they face. This study focuses in particular on public health nudges, to consider whether it is reasonable, and with what limits, their implementation in health crises (for example, pandemics). Analyzing that public policies face the dilemma between preserving freedom at the expense of health or, on the contrary, prioritize health to the point of limiting freedom. It is raised whether in this context greater restrictions on individual freedoms should be allowed (for example, through mandatory lockdowns and quarantines, imposed vaccinations, forced tests) or whether to use nudges as an intermediate solution and less harmful to individual rights to promote health measures.

En ciencias del comportamiento, la expresión nudge (del inglés, empujón, codazo) se refiere a cualquier aspecto de la arquitectura de la decisión que altera predeciblemente la conducta de las personas en su propio beneficio sin prohibir o restringir de forma significativa sus opciones. Sus promotores invocan el paternalismo libertario para justificarlo, lo que significa que se promueve el beneficio del individuo sin contar con su autonomía, pero sin llegar al punto de coartar la libertad de elección cuando ésta es manifiesta. En este trabajo se analiza el papel de los nudges en el ámbito de las políticas de salud. Se lleva a cabo un análisis cognitivo de ellos y se distinguen los nudges clínicos (aquellos que tienen lugar en el seno de la relación sanitario-paciente) de los nudges salubristas (específicos de políticas de salud pública). Se analizan los aspectos éticos de ambas categorías para señalar algunas de sus virtudes y los retos éticos que plantean. El estudio se centra, de manera particular, en los nudges salubristas, para considerar si es razonable, y con qué límites, su implementación en crisis sanitarias (por ejemplo, pandemias), donde las políticas públicas se enfrentan al dilema entre preservar la libertad a costa de la salud pública o, por el contrario, priorizar ésta hasta el punto de limitar aquélla. Se plantea si en este contexto se deberían permitir mayores restricciones de las libertades individuales (por ejemplo, mediante confinamientos y cuarentenas obligatorias, vacunación impuesta, etc.) o bien utilizar nudges como una salida intermedia y menos lesiva de derechos individuales para promover medidas sanitarias.