The Key Features of a Genetic Nondiscrimination Policy: A Delphi Consensus Statement.

Importance: Governments worldwide have become increasingly cognizant of the spread of genetic discrimination (negative treatment or harm on the basis of actual or presumed genetic characteristics). Despite efforts by a number of governments to establish regulations addressing this phenomenon, public concern about genetic discrimination persists. Objective: To identify key elements of an optimal genetic nondiscrimination policy and inform policymakers as they seek to allay genetic nondiscrimination and related public anxieties. Evidence Review: Sixty multidisciplinary experts from 20 jurisdictions worldwide were consulted to understand their views on effective genetic nondiscrimination policies. Following standard requirements of the Delphi method, 3 rounds of surveys over the course of 1.5 years were conducted. Round 1 focused on assessing participants' understanding of the intricacies of existing genetic nondiscrimination policies, while rounds 2 and 3 invited participants to reflect on specific means of implementing a more effective regime. A total of 60 respondents participated in the first round, 53 participated in round 2, and 43 participated in round 3. Findings: While responses varied across disciplines, there was consensus that binding regulations that reach across various sectors are most useful in preventing genetic discrimination. Overall, experts agreed that human rights-based approaches are well suited to preventing genetic discrimination. Experts also agreed that explicit prohibition of genetic discrimination within nondiscrimination policies can highlight the importance of genetic nondiscrimination as a fundamental right and ensure robust protection at a national level. While most participants believed the international harmonization of genetic nondiscrimination laws would facilitate data sharing worldwide, they also recognized that regulations must reflect the sociocultural differences that exist among regions. Conclusions and Relevance: As the reach of genetic discrimination continues to evolve alongside developments in genomics, strategic policy responses that are harmonious at the international and state levels will be critical to address this phenomenon. In seeking to establish comprehensive frameworks, policymakers will need to be mindful of regional and local circumstances that influence the need for and efficacy of unique genetic nondiscrimination approaches across diverse contexts.

Chapitre 9. Entre attachement aux principes du don du vivant et pragmatisme du législateur : l'extension du don croisé pour faciliter la greffe.

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.

Chapitre 9. Entre attachement aux principes du don du vivant et pragmatisme du législateur : l'extension du don croisé pour faciliter la greffe.

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.

Allocating organs through algorithms and equitable access to transplantation-a European human rights law approach.

Digitization in transplantation is not a new phenomenon. Algorithms are being used, for example, to allocate organs based on medical compatibility and priority criteria. However, digitization is accelerating as computer scientists and physicians increasingly develop and use machine learning (ML) models to obtain better predictions on the chances of a successful transplant. 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 article shows that achieving equitable access requires an overall vision of the algorithmic development process and that European legal norms only partially contribute to preventing harm and addressing equality in access to organs.

The Genetic Discrimination Observatory: confronting novel issues in genetic discrimination.

Genetic discrimination (GD) is the differential or unfair profiling of an individual on the basis of genetic data. This article summarizes the actions of the Genetic Discrimination Observatory (GDO) in addressing GD and recent developments in GD since late 2020. It shows how GD can take many forms in today's rapidly evolving society.

COVID-19 pandemic and derogation to human rights.

Under international human rights law, States can limit the exercise of most human rights if it is necessary to protect the rights of others or collective interests. The exceptional circumstances brought by the COVID-19 global pandemic lead to more extensive, on both their scope and their duration, restrictions of human rights than in usual times. This article introduces the States' specific right to derogate to human rights in circumstances of public emergency and the conditions of a legitimate derogation in the context of COVID-19. It argues that States must ensure that the general measures they adopt to face the crisis do not disproportionally harm vulnerable people.