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. (shrink)

The emerging international biomedical law tends to recognise the right not to know one’s genetic status. However, the basis and conditions for the exercise of this right remain unclear in domestic laws. In addition to this, such a right has been criticised at the theoretical level as being in contradiction with patient’s autonomy, with doctors’ duty to inform patients, and with solidarity with family members. This happens especially when non-disclosure poses a risk of serious harm to the patient’s relatives who, (...) without that vital information, could be deprived of preventive or therapeutic measures. This paper argues, firstly, that individuals may have a legitimate interest in not knowing their genetic make up to avoid serious psychological consequences; secondly, that this interest, far from being contrary to autonomy, may constitute an enhancement of autonomy; thirdly, that the right not to know cannot be presumed, but must be “activated” by the individual’s explicit choice, and fourthly, that this is not an absolute right, in the sense that it may be restricted when disclosure to the patient is necessary in order to avoid a risk of serious harm to third persons. (shrink)

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. (shrink)

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. (shrink)

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. (shrink)

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. (shrink)

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. (shrink)

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. (shrink)

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. (shrink)

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. (shrink)