Should continuous deep sedation until death be legally regulated in Switzerland? An exploratory study with palliative care physicians.

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.

Minding Rights: Mapping Ethical and Legal Foundations of 'Neurorights'.

The rise of neurotechnologies, especially in combination with artificial intelligence (AI)-based methods for brain data analytics, has given rise to concerns around the protection of mental privacy, mental integrity and cognitive liberty - often framed as "neurorights" in ethical, legal, and policy discussions. Several states are now looking at including neurorights into their constitutional legal frameworks, and international institutions and organizations, such as UNESCO and the Council of Europe, are taking an active interest in developing international policy and governance guidelines on this issue. However, in many discussions of neurorights the philosophical assumptions, ethical frames of reference and legal interpretation are either not made explicit or conflict with each other. The aim of this multidisciplinary work is to provide conceptual, ethical, and legal foundations that allow for facilitating a common minimalist conceptual understanding of mental privacy, mental integrity, and cognitive liberty to facilitate scholarly, legal, and policy discussions.

'How is it possible that at times we can be physicians and at times assistants in suicide?' Attitudes and experiences of palliative care physicians in respect of the current legal situation of suicide assistance in Switzerland.

INTRODUCTION: Switzerland lacks specific legal regulation of assistance in suicide. The practice has, however, developed since the 1980s as a consequence of a gap in the Swiss Criminal Code and is performed by private right-to-die organisations. Traditionally, assistance in suicide is considered contrary to the philosophy of palliative care. Nonetheless, Swiss palliative care physicians regularly receive patient requests for suicide assistance. Their attitudes towards the legal regulations of this practice and their experience in this context remain unclear. OBJECTIVES: Our study aimed to explore and describe the attitudes and experiences of Swiss palliative care physicians concerning the legal situation of suicide assistance. METHODS: In 2019, we performed an exploratory interview study with 12 Swiss palliative care physicians on palliative sedation as an alternative to assisted suicide. In this paper, we present the results that emerged from a thematic subanalysis of the data. RESULTS: Participants stated that assistance in suicide and palliative care are based on opposing philosophies, but they admitted a shift in paradigm over the last years in the sense that one practice does not necessarily exclude the other. They reported various roles in suicide assistance and considered that the current activities of Swiss right-to-die organisations were problematic and needed to be regulated by law. DISCUSSION AND CONCLUSION: These results could enrich national and international reflection on suicide assistance in the context of palliative care by reducing confusion between the two practices and strengthening the confidence of patients and their relatives.

Geneva Statement on Heritable Human Genome Editing: The Need for Course Correction.

As public interest advocates, policy experts, bioethicists, and scientists, we call for a course correction in public discussions about heritable human genome editing. Clarifying misrepresentations, centering societal consequences and concerns, and fostering public empowerment will support robust, global public engagement and meaningful deliberation about altering the genes of future generations.

Towards new human rights in the age of neuroscience and neurotechnology.

Rapid advancements in human neuroscience and neurotechnology open unprecedented possibilities for accessing, collecting, sharing and manipulating information from the human brain. Such applications raise important challenges to human rights principles that need to be addressed to prevent unintended consequences. This paper assesses the implications of emerging neurotechnology applications in the context of the human rights framework and suggests that existing human rights may not be sufficient to respond to these emerging issues. After analysing the relationship between neuroscience and human rights, we identify four new rights that may become of great relevance in the coming decades: the right to cognitive liberty, the right to mental privacy, the right to mental integrity, and the right to psychological continuity.

Integrating Advance Research Directives into the European Legal Framework.

The possibility of using advance directives to prospectively consent to research participation in the event of dementia remains largely unexplored in Europe. Moreover, the legal status of advance directives for research is unclear in the European regulations governing biomedical research. The article explores the place that advance research directives have in the current European legal framework, and considers the possibility of integrating them more explicitly into the existing regulations. Special focus is placed on issues regarding informed consent, the role of proxies, and the level of acceptable risks and burdens.

Does the new EU Regulation on clinical trials adequately protect vulnerable research participants?

Vulnerable research participants deserve special protection because of their increased risks of being wronged. Yet, paradoxically, the conduct of trials involving vulnerable groups is sometimes inescapable to develop safe and efficient therapies suitable to these groups. The key question is therefore how to protect vulnerable research participants from harm and exploitation without excluding the populations they belong to from the benefits of research. The European Union faced this challenge in April 2014 when adopting the new Regulation on clinical trials, which will replace the currently applicable 2001 Clinical Trials Directive in 2016. In order to assess the protection of vulnerable persons in the new Regulation, this paper makes four suggestions: first, the need to adopt a risk-based approach to vulnerability in biomedical research; second, to better distinguish between decisional vulnerabilities and health-related vulnerabilities; third, to emphasise the need to preserve the freedom of consent of subjects with decisional vulnerability, who are more susceptible to undue influence; and finally to assert the need of actively promoting specific clinical trials involving people with physical or psychological vulnerabilities. In conclusion, this paper claims that the protection of vulnerable subjects still needs to be improved in the new EU Regulation.

Protecting prisoners' autonomy with advance directives: ethical dilemmas and policy issues.

Over the last decade, several European countries and the Council of Europe itself have strongly supported the use of advance directives as a means of protecting patients' autonomy, and adopted specific norms to regulate this matter. However, it remains unclear under which conditions those regulations should apply to people who are placed in correctional settings. The issue is becoming more significant due to the increasing numbers of inmates of old age or at risk of suffering from mental disorders, all of whom might benefit from using advance directives. At the same time, the closed nature of prisons and the disparate power relationships that characterise them mean that great caution must be exercised to prevent care being withdrawn or withheld from inmates who actually want to receive it. This paper explores the issue of prisoners' advance directives in the European context, starting with the position enshrined in international and European law that prisoners retain all their human rights, except the right to liberty, and are therefore entitled to self-determination regarding health care decisions.

The dual role of human dignity in bioethics.

This paper argues that some of the misunderstandings surrounding the meaning and function of the concept of human dignity in bioethics arise from a lack of distinction between two different roles that this notion plays: one as an overarching policy principle, and the other as a moral standard of patient care. While the former is a very general concept which fulfils a foundational and a guiding role of the normative framework governing biomedical issues, the latter reflects a much more concrete and context-specific understanding of the patient as a "person". The importance of dignity as a policy principle will be described by appealing to the distinction between principles and rules as developed by some legal philosophers. The value of dignity as a standard of patient care will be illustrated with the help of concrete examples and by drawing on the taxonomies of dignity proposed by Jonathan Mann and other scholars. The overall scope of the article is to highlight this double and complementary role of human dignity in bioethics.

[Human dignity, human rights and bioethics: what is the connection?]. / Dignité humaine, droits de l'homme et bioéthique: quel rapport?

Human rights are closely related to the notion of human dignity, to such a point that it is very difficult, if not impossible, to promote them without appealing, at least implicitly, to the idea that each individual has intrinsic worth simply by virtue of being human. This relationship between dignity and rights is even stronger in the field of bioethics, which deals directly with some of the most basic human rights, such as the rights to life and to physical integrity. It is therefore not by chance that the international norms relating to bioethics give a central role to the concept of human dignity. However, one should not expect from dignity more than it can offer; dignity is a "principle", not a "rule"; it embodies a fundamental value, but it alone does not determine the content of a particular decision.

Advance health care directives: towards a coordinated European policy?

The aim of this paper is to compare the different existing approaches to advance health care directives within the European context, and to explore the possibility of reaching a deeper consensus among countries on this subject. To this end, it first discusses the shortcomings of Article 9 of the Council of Europe's Biomedicine Convention. Second, it offers a comparative analysis of the legal status of advance directives in a number of European countries. Finally, it presents the conclusions of an international interdisciplinary workshop focused on this topic that was held in Zurich in June 2008.

Human dignity and human rights as a common ground for a global bioethics.

The principle of respect for human dignity plays a crucial role in the emerging global norms relating to bioethics, in particular in the UNESCO Universal Declaration on Bioethics and Human Rights. This instrument, which is a legal, not merely an ethical document, can be regarded as an extension of international human rights law into the field of biomedicine. Although the Declaration does not explicitly define human dignity, it would be a mistake to see the emphasis put on this notion as a mere rhetorical strategy. Rather, the appeal to dignity reflects a real concern about the need to promote respect both for the intrinsic worth of human beings and for the integrity of the human species. But dignity alone cannot solve most of the dilemmas posed by biomedical practice. This is why international biolaw combines, on the one hand, the appeal to human dignity as an overarching principle with, on the other hand, the recourse to human rights, which provide an effective and practical way forward for dealing with bioethical issues at a global level.