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.

The advent of forensic DNA databases: It's time to agree on some international governance principles!

National forensic DNA databases are a valuable investigative tool, that have the potential to increase the efficacy of criminal investigations. Their unfettered expansion in recent years raises unsettling ethical issues that require close attention. DNA database expansion threatens the rights to privacy, non-discrimination, and equality, and can undermine public trust in government. This perspective piece relies on data from an international mapping study of Forensic DNA Databases to document the expansion of these databases, highlight the ethical issues they raise, and propose key recommendations for more responsible use of this infrastructure.

A proposal for an inclusive working definition of genetic discrimination to promote a more coherent debate.

Genetic discrimination is an evolving phenomenon that impacts fundamental human rights such as dignity, justice and equity. Although, in the past, various definitions to better conceptualize genetic discrimination have been proposed, these have been unable to capture several key facets of the phenomenon. In this Perspective, we explore definitions of genetic discrimination across disciplines, consider criticisms of such definitions and show how other forms of discrimination and stigmatization can compound genetic discrimination in a way that affects individuals, groups and systems. We propose a nuanced and inclusive definition of genetic discrimination, which reflects its multifaceted impact that should remain relevant in the face of an evolving social context and advancing science. We argue that our definition should be adopted as a guiding academic framework to facilitate scientific and policy discussions about genetic discrimination and support the development of laws and industry policies seeking to address the phenomenon.

What can implementation science offer civil society in their efforts to drive rights-based health reform?

Over the years, civil society organizations (CSOs) have made tremendous efforts to ensure that state policies, programmes, and actions facilitate equitable access to healthcare. While CSOs are key actors in the realization of the right to health, a systematic understanding of how CSOs achieve policy change is lacking. Implementation science, a discipline focused on the methods and strategies facilitating the uptake of evidence-based practice and research can bring relevant, untapped methodologies to understand how CSOs drive health reforms. This article argues for the use of evidence-based strategies to enhance civil society action. We hold that implementation science can offer an actionable frame to aid CSOs in deciphering the mechanisms and conditions in which to pursue rights-based actions most effectively. More empirical studies are needed to generate evidence and CSOs have already indicated the need for more data-driven solutions to empower activists to hold policymakers to account. Although implementation science may not resolve all the challenges CSOs face, its frameworks and approaches can provide an innovative way for organizations to chart out a course for reform.

What Role Can the Right to Health Play in Advancing Equity in Kidney Care?

Kidney disease, whether acute or chronic, is an important health concern for more than 750 million people worldwide. Although its magnitude has been better studied within developed countries, evidence increasingly suggests similar scales of impact in developing and underdeveloped countries. On a shared planet where limited resources and high costs keep life-saving care out of reach for the poor and other structurally disadvantaged populations, addressing health concerns on such a large scale requires a governing basis in the recognition of the universal right to health. As designed under international human rights law, the right to health is meant to be legally enforceable on par with other human rights, and so provides a firm guiding framework for advancing health equity. This article traces the evolution of the right to health in international human rights law while assessing the framework's potential contributions to equitable access to treatment in forums including domestic litigation and rights-based advocacy tools. This article ultimately outlines and clarifies the right to health as a viable, justiciable means for advancing equitable access to kidney treatment and care.

Human rights versus legal control over women's reproductive self-determination.

States have a duty under international human rights law to protect people's health. Nonetheless, while some health-related policies and laws protect basic human rights, others violate fundamental rights when they criminalize, prohibit, and restrict access to necessary health services. For example, laws and regulations related to protection of life from conception, contraception, actions of pregnant women, and abortion can harm women and place women and health care providers in jeopardy of legal penalization. Given the adverse consequences of punitive and restrictive laws related to pregnancy, advocates, civil society groups, human rights groups, and government institutions must work together to promote, protect, and fulfill women's fundamental reproductive rights.