Roberto Andorno

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.

IntroductionSwitzerland 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.ObjectivesOur study aimed to explore and describe the attitudes and experiences of Swiss palliative care physicians concerning the legal situation of suicide assistance.MethodsIn 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.ResultsParticipants 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 conclusionThese 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.

A discussion with Roberto Andorno about global bioethics and biolaw, the Coronavirus pandemic, and its impact on human dignity and rights. Can we foresee the emerging new profile of global bioethics and biolaw in the post-Coronavirus era? How significant are they going to be in the future, after the enormous pressure that the Coronavirus pandemic has exercised on key political, legal, and ethical values? Must the voice of bioethicists -compared to the ‘hard’ scientific data- be louder in the future concerning decisions about emergency social and medical measures? Is there a hope that public empowerment will support robust, global public engagement and meaningful deliberation? How much does Roberto Andorno’s view on human dignity reveal a supposed commitment to moral realism? The massive deaths of elderly people living in hospices of Sweden, Spain, and Italy, based on an implicit ‘fair innings’ view, has recently posed certain questions on the moral unacceptability of such practices. The same questions arise in the case of the legalization of euthanasia grounded on the implicit acceptance of the view that life is not worth living under certain circumstances. Is it possible that the human rights bodies worldwide will acquire executive power, and how could this become possible? How influential the ‘precautionary principle’ can become regarding clinical and research ethics in the future? How urgent is the importance of the introduction of bioethical education in the curricula of ‘hard’ empirical studies? Roberto Andorno discusses with us all these controversial and under heated public debate issues, giving sometimes provocative answers.

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.

El artículo destaca la importancia de distinguir entre dos roles diversos que la noción de dignidad humana juega en bioética: uno, como principio de orden jurídico-político, y otro, como estándar moral del trato debido al paciente. Cuando la dignidad es entendida en el primer sentido, nos encontramos con un concepto muy general, que cumple un rol fundacional y de orientación de las normas relacionadas con las prácticas biomédicas. En cambio, cuando es utilizada en el segundo sentido, intenta captar la exigencia moral de tratar siempre al paciente como “persona”, es decir, con el mayor cuidado y respeto. Para clarificar el significado de la dignidad como principio, se apela a la distinción entre principios y normas elaborada en el campo de la filosofía jurídica. La dignidad como estándar moral de la relación médico-paciente se ilustra en base a una serie de estudios empíricos.

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.

The Universal Declaration on Bioethics and Human Rights adopted by the United Nations Educational, Scientific, and Cultural Organisation on 19 October 2005 is an important step in the search for global minimum standards in biomedical research and clinical practice. As a member of UNESCO International Bioethics Committee, I participated in the drafting of this document. Drawing on this experience, the principal features of the Declaration are outlined, before responding to two general charges that have been levelled at UNESCO’s bioethical activities and at this particular document, are outlined. One criticism is to the effect that UNESCO is exceeding its mandate by drafting such bioethical instruments—in particular, the charge is that it is trespassing on a topic that lies in the responsibility of the World Health Organization. The second criticism is that UNESCO’s reliance on international human rights norms is inappropriate

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.