Extracts (intro):Potential interactions between AI and economic, social and cultural rights have received less attention in the legal literature [than between AI and civil and political rights]. Yet, the reference to human rights law to achieve social justice in AI may only be fully prolific if its interpretation is transversal and coherent. This implies to go beyond the traditional and outdated « generations » of human rights, to include social, economic and cultural aspects in the equation. This analysis is even more important that essential services such as health care rely more and more on an AI designed by private actors on a transnational scene, including big corporations like Google or IBM, jeopardizing social and cultural rights. Medicine interacts in many ways with culture. In particular, biomedical practices such as organ donation or assisted reproduction technologies substantially vary between continental regions and between countries, but also sometimes between regions of a given nation state. Language, beliefs and religion also influence our attitudes towards illness and health professionals and, more broadly, our understandings of health and biomedicine. The disappearance of indigenous languages for instance threatens traditional medicinal knowledge. Therefore, the social and legal analysis of AI in healthcare cannot ignore this close link between culture and medicine when it comes to developing and applying a supposedly neutral and universal technology to peoples.This book chapter contributes to the analysis of social justice for medical AI by exploring the interactions between the protection of culture and the development of medical AI within a human rights framework. It builds on an anthropological definition of culture, transmitted or built in contact with other groups, rather than on culture as a creative process. This chapter considers shared representations and normative practices as part of a non-static understanding of culture. […]. Culture is not only an individual and collective right. It also participates in the effectiveness of other human rights, which depends on the acceptability of the measures that States take in order to implement such rights. […] Within the framework of human rights and their underlying principles of interdependence and universalism, achieving cultural appropriateness and therefore legitimacy requires a process of conflict resolution between individual and collective cultural rights on the one hand, and between different collective cultural rights on the other hand. Cultural rights aim to ensure the concrete effectiveness of rights and cannot lead to cultural relativism and the justification of practices contrary to rights. Faced with the transnational development of AI, exploring the cultural appropriateness of health algorithms is therefore necessary both from a substantive perspective (it questions the claim of a neutral and uniform technology), but also from a procedural perspective (it contributes to the framing of an AI developed by multiple actors, including multinational companies with predatory practices). This concept may contribute to the sustainability of AI, reconciling legitimate collective and individual interests. […]. A culturally appropriate medical AI would call for both procedural and substantive inclusion of culture in the AI development process. First, cultural appropriateness requires States to guarantee a procedural right to participation in health-decision making, which implies the consultation of concerned peoples and the representation of relevant cultural factors in the implementation of digital health solutions (1). Second, cultural appropriateness demands the adaptation of AI by the incorporation of concerned populations’ relevant and legitimate cultural values and perceptions in the algorithms through active design choices (2).

The use and development of algorithms in health care, including machine learning, contributes to the discovery of better treatments for patients and offers promising perspectives in the fight against cancer and other diseases. Yet, algorithms are not a neutral health product since they are programmed by humans, with the risk of propagating human rights infringements. In the medical area, human rights impact assessments need to be conducted for applications involving AI. Apart from offering a consistent and transversal substantive approach to AI, human rights law, and in particular the UN Guiding Principles on Business and Human Rights, would allow the targeting of all stakeholders, including the corporations developing health care algorithms. Such an approach would establish a chain of duties and responsibilities bringing more transparency and consistency in the overall process of developing AI and its later uses. Although this approach would not solve all AI challenges, it would offer a framework for discussion with all relevant actors, including vulnerable populations. An increase in human rights education of medical doctors and data scientists, and further collaboration at the initial stages of algorithm development would greatly contribute to the creation of a human rights culture in the techno-science space.

The objective of the article is to shed light on the potential threats to equitable access to organs allocated through algorithms, whether these are the consequence of political choices made upstream of digitization or of the algorithmic design, or are produced by self-learning algorithms.

The new French bioethical legislation does not introduce any major changes in the area of organ transplantation. It does, however, facilitate the implementation of cross-over donation programs by increasing the number of living donor/recipient pairs eligible to participate in the program. By setting the number of pairs at six, the law is likely to allow this promising transplant program to take off. In order to mitigate the risk of a donor withdrawing and to facilitate the matching, the legislator has chosen to integrate a deceased donor organ to initiate the cross-donation program. This pragmatic choice reflects the hybrid regime of cross-over donation, since the legislator, while reaffirming the attachment to the principles of living donation, borrows from the logic of post-mortem donation.

Although artificial intelligence contributes to the improvement of health care systems, it also raises issues of accessibility without discrimination to health services, which is an essential element of the human right to health. Several international and European treaties, including the International Covenant on Economic, Social and Cultural Rights, protect the right to health. As a contracting state of this Covenant, Denmark is bound by its content. Danish’s highly digitalized public sector, including health care, must therefore be assessed regarding the right to health, especially accessibility to everyone. We argue that digitalization is generally compatible with information accessibility in the Danish context. However, the country will need to be attentive to the situation of its vulnerable populations in order to avoid the propagation of bias and discrimination by artificial intelligence-driven health care. A transparent and safeguarded use of real-world data and data disaggregation may contribute to mitigate those risks.

Genetic discrimination can be defined as the differential, negative, treatment or unfair profiling of an individual based on presumed or actual genetic characteristics or on omics data. In the face of rapidly developing omics and data-driven technologies, coordinated actions need to be undertaken by stakeholders to document and address adverse consequences of technical advances and the genetic revolution. This article aims to inform the community about an international organization developed to address genetic discrimination, the Genetic Discrimination Observatory (GDO), and developments that have occurred since its international launch in late 2020. These developments indicate that genetic discrimination can take many forms and happen in multiple contexts in today’s rapidly evolving scientific and social environment. The need for an international organisation such as the GDO to inform the community and respond to these developments becomes crucial in this context.

Despite its strong affirmation on the international scene, reproductive liberty has not been very successful in realising reproductive rights under European human rights law. The aim of this article is to examine two possible argumentative avenues for reframing reproductive rights, the market and the health frameworks. The authors argue that those approaches to reproductive issues enrich reproductive rights and should be better considered by the European Court of Human Rights in order to frame a European concept of reproductive rights.

This article researches the basis of the concept of reproductive rights in the case law of the European Court of Human Rights (ECtHR). After a systematic and transversal presentation the ECtHR’s jurisprudence on reproductive issues, the article argues that the ECtHR does not capture the specificity of reproductive rights, especially the gender perspective and the importance of reproductive health. Faced with arguments of prioritization of certain rights, the ECtHR repeatedly applies the European Convention on Human Rights to domestic rights as if they were neutral and often avoids addressing claims related to discrimination. Besides, while reproductive health is at the core of reproductive rights, the ECtHR’s case law shows self-restraint unless there is a very serious threat on the women’s health. This contrasts with international standards on the right to health. Without considering those essentialist and realistic characteristics of reproductive issues, the ECtHR fails to develop a European concept of reproductive rights. The last parts of the article present the political constraints that plague on the ECtHR, which may explain the minimalist jurisprudence in this area. However, those constraints do not justify all the inconsistencies in the ECtHR’s use of the European consensus and the margin of appreciation doctrine in the field of reproductive rights.

There is no doubt that COVID-19 will have a substantial impact on access to biologics and biosimilar uptake, as well as on the related ethical, legal, and social dimensions of prioritization decisions. This holds especially true for Denmark and European markets, where governments are expected to cover most of the pharmaceutical needs of their citizens and where the crisis has been leading to an important reduction of available resources. In this paper we make four key comments relating to (1) broader ethico-legal dimensions of prioritizations in Europe, (2) human rights law and (3) regulatory aspects of access, diversification, vulnerability and systemic trust, and (4) additional challenges posed by COVID-19.

Organisé par l’Institut Maurice Hauriou de l’Université Toulouse Capitole, la Chaire UNESCO « Éthique Science et Société » et l’Espace de Réflexion Éthique