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El presente informe fue preparado por encargo de la UNESCO (Oficina Regional para América Latina y el Caribe). En primer lugar, el Informe destaca el notable desarrollo neurocientífico que ha tenido lugar en los últimos años en varios países latinoamericanos, tanto en actividades clínicas como de investigación. En segundo lugar, al abordar la perspectiva de derechos humanos, el informe identifica cuatro derechos que están llamados a jugar un rol central en la materia: la privacidad mental, la integridad mental, la identidad personal y la libertad cognitiva. El documento presenta a continuación las diversas propuestas de regulación de la materia por parte de distintos organismos internacionales y regionales latinoamericanos, así como a nivel de los órganos legislativos de países de la región, enfatizando el liderazgo de la UNESCO, que puede ser una fuerza motriz en materia de neurotecnología dentro del sistema de las Naciones Unidas, gracias a su mandato único y su experiencia en bioética y ética de la ciencia y la tecnología.

Background: In Switzerland, continuous deep sedation until death (CDSUD) is not legally regulated and the current clinical practice guidelines on palliative sedation from 2005 do not refer to it. In contrast, in France, a neighbouring country, CDSUD is regulated by a specific law and professional guidelines. International studies show that in culturally polymorphic countries, there are variations in the end-of-life practices between linguistic regions and that a linguistic region shares many cultural characteristics with the neighbouring country. Objectives: This study aimed to explore the attitudes of palliative care physicians from the French-speaking part of Switzerland on the question of whether CDSUD should be legally regulated in the country, and to identify their arguments. Our study also aimed to assess whether a hypothetical Swiss law on CDSUD should be similar to the current legal regulation of this practice in France. Design: We conducted a multicentre exploratory qualitative study based on face-to-face interviews with palliative care physicians in the French-speaking part of Switzerland. Methods: We analysed the interview transcripts using thematic analysis, combining deductive and inductive coding. Results: Most of the participants were opposed to having specific legal regulation of CDSUD in Switzerland. Their arguments were diverse: some focused on medical and epistemological aspects of CDSUD, whereas others emphasized the legal inconvenience of having such regulation. None had the opinion that, if CDSUD were legally regulated in Switzerland, the regulation should be similar to that in France. Conclusion: This study allows to better understand why palliative care physicians in French-speaking Switzerland may be reluctant to have legal regulation of CDSUD. Further studies covering the whole country would be needed to gain a more complete picture of Swiss palliative care physicians on this question.

The use of neurotechnologies for surveillance in the workplace have the potential to impact the entire working population of the world. Currently, with the help of neurodevices, employers could analyze the brain data from employees to assess their cognitive functions (such as mental capacity and efficiency), cognitive patterns (such as response to stress), and even detect neuropathologies. The workers brain data obtained with wearable neurodevices could serve employers for purposes such as promotion, hiring, or dismissal. Neurodevices could also be used as new micromanagement tools, aimed at monitoring employees' attention at work. Additionally, they can be implemented as tools for self-control for workers, as the feedback provided about their current cognitive state can help improve the outcomes of ongoing tasks and ensure safety. Recent studies have shown that while employees may recognize the potential benefits of using such technology for self-monitoring purposes, they have a negative perception toward its implementation in the workplace. Surprisingly, only a few scientific papers specifically address the issues of neurosurveillance in the workplace, while international frameworks have not yet provided precise responses to these new intrusive methods of monitoring workers. The overall goal of this paper is to discuss whether employers should be allowed to use neurosurveillance technologies in the workplace to monitor their employees' minds and, if so, under what circumstances. The authors take a hypothetical scenario of neurosurveillance in the workplace using EEG-based devices as a starting point for their analysis. On this basis, three key ethical issues are identified: an increasing power imbalance in the employment relationship; a new threat to employees' privacy, and a risk of neurodiscrimination.

This chapter analyses rights in the context of reproductive technology. It begins by examining the evolving nature of reproductive rights, situating reproductive rights within broader debates over health and human rights. The chapter also explores the role of developments in assisted reproductive technology in shaping debates over rights. In analysing the evolution of rights in the context of assisted reproduction, the chapter explores: the role of ethics in regulatory debates over assisted reproduction; the issue of access to assisted reproduction; and the globalisation of health care, including health tourism, and its relevance for assisted reproduction. The analysis of each of these areas will include consideration of the role of law in defining reproductive rights.

This chapter argues that the notion of human dignity provides an overarching normative framework for assessing the ethical and legal acceptability of emerging life sciences technologies. After depicting the increasing duality that characterizes modern technologies, this chapter examines two different meanings of human dignity: the classical meaning that refers to the inherent worth of every individual, and the more recent understanding of this notion that refers to the integrity and identity of humankind, including future generations. The close connection between human dignity and human rights is outlined, as well as the key-role of dignity in international human rights law, and very especially in the human rights instruments relating to bioethics. The chapter concludes by briefly presenting the challenges to human dignity and human rights posed by neurotechnologies and germline gene editing technologies.

The COVID-19 pandemic has highlighted that leveraging medical big data can help to better predict and control outbreaks from the outset. However, there are still challenges to overcome in the 21st century to efficiently use medical big data, promote innovation and public health activities and, at the same time, adequately protect individuals’ privacy. The metaphor that property is a “bundle of sticks”, each representing a different right, applies equally to medical big data. Understanding medical big data in this way raises a number of questions, including: Who has the right to make money off its buying and selling, or is it inalienable? When does medical big data become sufficiently stripped of identifiers that the rights of an individual concerning the data disappear? How have different regimes such as the General Data Protection Regulation in Europe and the Health Insurance Portability and Accountability Act in the US answered these questions differently? In this chapter, we will discuss three topics: (1) privacy and data sharing, (2) informed consent, and (3) ownership. We will identify and examine ethical and legal challenges and make suggestions on how to address them. In our discussion of each of the topics, we will also give examples related to the use of medical big data during the COVID-19 pandemic, though the issues we raise extend far beyond it.

This article reviews educational efforts to promote a responsible conduct of research (RCR) that were reported in scientific publications between 1990 and early 2020. Unlike previous reviews that were exploratory in nature, this review aimed to test eleven hypotheses on effective training strategies. The achievement of different learning outcomes was analyzed independently using moderator analysis and meta-regression, whereby 75 effect sizes from 30 studies were considered. The analysis shows that the achievement of different learning outcomes ought to be investigated separately. The attainment of knowledge strongly benefited from individualized learning, as well as from the discussion and practical application of ethical standards. Contrarily, not covering ethical standards tended to be a feature of successful courses, when looking at other learning outcomes. Overall, experiential learning approaches where learners were emotionally involved in thinking about how to deal with problems were most effective. Primarily intellectual deliberation about ethical problems, often considered the “gold standard” of ethics education, was significantly less effective. Several findings from previous reviews, e.g., the preferability of mono-disciplinary groups, could not be replicated with multivariate analysis. Several avenues for future research efforts are suggested to advance knowledge on the effectiveness of research integrity training.