Lasker∼Koshland to genetics pioneer.

The 2014 Lasker∼Koshland Special Achievement Award will be presented to Mary-Claire King, a pioneer and visionary who revolutionized the use of genetics to identify disease genes, provide insights into human evolution, and champion human rights causes.

Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data.

Addressing Indigenous rights and interests in genetic resources has become increasingly challenging in an open science environment that promotes unrestricted access to genomic data. Although Indigenous experiences with genetic research have been shaped by a series of negative interactions, there is increasing recognition that equitable benefits can only be realized through greater participation of Indigenous communities. Issues of trust, accountability and equity underpin Indigenous critiques of genetic research and the sharing of genomic data. This Perspectives article highlights identified issues for Indigenous communities around the sharing of genomic data and suggests principles and actions that genomic researchers can adopt to recognize community rights and interests in data.

Human rights and the COVID-19 pandemic: a retrospective and prospective analysis.

When the history of the COVID-19 pandemic is written, the failure of many states to live up to their human rights obligations should be a central narrative. The pandemic began with Wuhan officials in China suppressing information, silencing whistleblowers, and violating the freedom of expression and the right to health. Since then, COVID-19's effects have been profoundly unequal, both nationally and globally. These inequalities have emphatically highlighted how far countries are from meeting the supreme human rights command of non-discrimination, from achieving the highest attainable standard of health that is equally the right of all people everywhere, and from taking the human rights obligation of international assistance and cooperation seriously. We propose embedding human rights and equity within a transformed global health architecture as the necessary response to COVID-19's rights violations. This means vastly more funding from high-income countries to support low-income and middle-income countries in rights-based recoveries, plus implementing measures to ensure equitable distribution of COVID-19 medical technologies. We also emphasise structured approaches to funding and equitable distribution going forward, which includes embedding human rights into a new pandemic treaty. Above all, new legal instruments and mechanisms, from a right to health treaty to a fund for civil society right to health advocacy, are required so that the narratives of future health emergencies-and people's daily lives-are ones of equality and human rights.

Analysing governments' progress on the right to health.

Objective: To examine the influence of varying articulations of the right to health under domestic constitutions, legislation and jurisprudence on the scope of legal protection for health. Methods: We investigated legal recognition of the right to health, by conducting a three-level search. First, we searched databases containing constitutional texts. Second, we did a thematic analysis of those constitutional texts with explicit constitutional recognition of health rights, employing NVivo for coding. For the 54 World Health Organization (WHO) Member States without explicit constitutional provisions, we explored statutory paths, judicial constructions and instances where both methods contributed to the acknowledgement of health rights. Lastly, we confirmed evidence of jurisprudence constructing a right to health based on a combination of domestic law and international human rights norms incorporated directly into the text. Findings: We identified 140 WHO Member States with a constitutionalized right to health. Our analysis suggests there are notable variations in the legal scope of protection for health, including breadth of entitlements and the possibility of enforcing these rights through the legal system. We also highlight the critical importance of constitutional acknowledgement, legislative measures, and judicial interpretations in shaping the legal entitlements to health-care services, affecting their accessibility and financial support. Conclusion: The analysis offers insights for policy-makers to assess different approaches to health-related entitlements, with implications for health financing and the evaluation of Member States' strides towards universal access to comprehensive care. This analysis also illuminates how distinct formulations of the right to health have varied effects on reducing health disparities.

Human Rights in Hospitals: an End to Routine Shackling.

Medical students (NSB, NM, JDW) spearheaded revision of the policy and clinical practice for shackling incarcerated patients at Boston Medical Center (BMC), the largest safety net hospital in New England. In American hospitals, routine shackling of incarcerated patients with metal restraints is widespread-except for perinatal patients-regardless of consciousness, mobility, illness severity, or age. The modified policy includes individualized assessments and allows incarcerated patients to be unshackled if they meet defined criteria. The students also formed the Stop Shackling Patients Coalition (SSP Coalition) of clinicians, public health practitioners, human rights advocates, and community members determined to humanize the inpatient treatment of incarcerated patients. Changes pioneered at BMC led the Mass General Brigham health system to follow suit. The Massachusetts Medical Society adopted a resolution authored by the SSP Coalition, which condemned universal shackling and advocated for use of the least restrictive alternative. This will be presented to the American Medical Association in June 2024. The Coalition led a similar effort to coauthor a policy statement on the issue, which was formally adopted by the American Public Health Association in November 2023. Most importantly, in an unprecedented human rights victory, a BMC patient who was incarcerated, sedated, and intubated was unshackled by correctional officers for the purpose of preserving human dignity.

Why identification matters: an explorative study on six cases of family reunification.

The escalating phenomenon of migration, accompanied by a disturbing surge in associated tragedies, has persistently violated internationally protected human rights. Absence of physical evidence, namely the presence of adequately identified corpses, may impede the full enjoyment of human rights and-in some cases-the course of justice as it obstructs the initiation of legal proceedings against individuals implicated in causing such catastrophes. It also presents administrative obstacles, as death certificates are indispensable in legitimizing statuses like orphanhood and widowhood. Family reunification, particularly for orphans, plays a significant role for those attempting to reconnect with their relatives all over the world. Likewise, for mothers, the acknowledgment of their marital status or widowhood can be a pathway to regain their marginalized right to social life. To elucidate this issue, we analyzed six representative cases from the tragic October 3, 2013, shipwreck near the Italian island of Lampedusa, where 366 individuals were retrieved dead from the sea. These cases underscore the practical challenges involved, highlighting the compelling need for continued efforts to ensure that this burdensome problem transcends from being a mere ethical, moral, and legal discourse. Although considerable progresses, these cases also reveal that substantial work still lies ahead. There is a pressing need for improved mechanisms to certify kinship ties, which are often the limiting factor in many reunifications, and can hinder the granting of custody to children. The severity and far-reaching implications of this problem necessitate thoughtful attention and action, especially considering the ongoing escalation in migration and related fatalities.

Mapping a research-advocacy-policy agenda on human rights and albinism: a mixed methods project.

BACKGROUND: Persons with albinism face challenges to their wellbeing, safety, and security, ranging from vision impairment and skin cancer to stigma and discrimination. In some regions, they also face human rights atrocities including mutilation and murder. Research on human rights and albinism is a relatively new field that has gained momentum since the United Nations appointment of an Independent Expert on the enjoyment of human rights by persons with albinism. In this paper, we present the results of a mixed methods study undertaken to identify priorities for research, advocacy, and policy on albinism and human rights. METHODS: The first component was a synthesis of peer-reviewed and grey literatures at the nexus of albinism, spiritual/cultural beliefs and practices, and human rights. We then conducted a priority-setting survey, informed by Delphi methods, on extant knowledge-practice gaps and research, advocacy, and policy priorities. Inclusion criteria included demonstrated expertise in the field (e.g., peer-reviewed publications, funded research), membership on national or international associations, or advocacy (civil society organizations) of more than 2 years in albinism and human rights. Thereafter, we gathered leading researchers, policy-makers, and civil society stakeholders for a Roundtable to gain consensus on these priorities. RESULTS: Access to skin and vision care, and education were not deemed high priority for research, likely because the evidence supporting the need for these is well established. However, they were priorities for advocacy and policy: what is needed is mobilization of this evidence through advocacy and implementation of such services (policy). Other social determinants of health (rurality, poverty, and gender equality) are present as subtext in the findings, more so than priorities for research, advocacy, or policy, despite their preponderance in the lives of persons with albinism. Research was prioritized on stigma and discrimination; advocacy; and witchcraft, but with some differentiation between Global North and Global South priorities. Priorities for research, advocacy, and policy vary in keeping with the explanatory frameworks at play, including how harmful practices and witchcraft are viewed. CONCLUSIONS: The lived experience of albinism is profoundly shaped by the social determinants of health (SDOH). Threats to the security and well-being of persons with albinism should be viewed through a human rights lens that encompasses the explanatory frameworks at play.

Leaving no one behind: addressing the sexuality of people with disabilities.

Addressing the sexuality of individuals with disabilities is important within the framework of global health and societal inclusivity. Despite comprising 16% of the world's population, this demographic faces sexual autonomy inequality. Acknowledging this intersection is pertinent for achieving inclusive healthcare and upholding the commitments of the 1994 International Conference on Population and Development and the 2006 United Nations Convention on the Rights of Persons with Disabilities. Dispelling stereotypes and promoting dialogue are key to empowering individuals with disabilities and ensuring equitable access to sexual health resources. Integrating sexual health and rights into broader healthcare systems is vital for creating an inclusive society where no one is left behind. This article advocates for the need to address the specific sexual health needs and rights of individuals with disabilities, to implement inclusive policies, and to foster a healthcare environment that respects and supports their autonomy and dignity.

Intrinsic excitability of human right parietal cortex shapes the experienced visual size illusions.

Converging evidence has found that the perceived visual size illusions are heritable, raising the possibility that visual size illusions might be predicted by intrinsic brain activity without external stimuli. Here we measured resting-state brain activity and 2 classic visual size illusions (i.e. the Ebbinghaus and the Ponzo illusions) in succession, and conducted spectral dynamic causal modeling analysis among relevant cortical regions. Results revealed that forward connection from right V1 to superior parietal lobule (SPL) was predictive of the Ebbinghaus illusion, and self-connection in the right SPL predicted the Ponzo illusion. Moreover, disruption of intrinsic activity in the right SPL by repetitive transcranial magnetic stimulation (TMS) temporally increased the Ebbinghaus rather than the Ponzo illusion. These findings provide a better mechanistic understanding of visual size illusions by showing the causal and distinct contributions of right parietal cortex to them, and suggest that spontaneous fluctuations in intrinsic brain activity are relevant to individual difference in behavior.

Rethinking the Definition of Medicalized Female Genital Mutilation/Cutting.

In 2015, the international community agreed to end Female Genital Mutilation/Cutting (FGM/C) by 2030. However, the target is unlikely to be met as changes in practice, including medicalized female genital mutilation/cutting (mFGM/C), challenge abandonment strategies. This paper critically reviews the current World Health Organization (WHO) definition of mFGM/C to demonstrate that mFGM/C, as currently defined, lacks detail and clarity, and may serve as an obstacle to the collection of credible, reliable, and comparable data relevant to targeted FGM/C prevention policies and programs. The paper argues that it is necessary to initiate a discussion on the revision of the current WHO definition of mFGM/C, where different components (who-how-where-what) should be taken into account. This is argued by discussing different scenarios that compare the current WHO definition of mFGM/C with the actual practice of FGM/C on the ground. The cases discussed within these scenarios are based on existing published research and the research experience of the authors. The scenarios focus on countries where mFGM/C is prevalent among girls under 18 years, using data from Demographic Health Surveys and/or Multiple Indicator Cluster Surveys, and thus the focus is on the Global South. The paper places its arguments in relation to wider debates concerning female genital cosmetic surgery, male genital circumcision and consent. It calls for more research on these topics to ensure that definitions of FGM/C and mFGM/C reflect the real-world contexts and ensure that the human rights of girls and women are protected.

A human right to pleasure? Sexuality, autonomy and egalitarian strategies.

A growing focus on pleasure in human rights discourse has been used to address patterns of sexual exclusion, often when addressing the problems of people with disabilities (PWD). As convincingly argued by Liberman, however, not all PWD suffer from sexual exclusion, and not all who suffer from sexual exclusion are PWD. Danaher and Liberman have thus argued in various ways for a broader range of measures, addressing sexual exclusion. This article builds on previous research and offers a conceptual framework for addressing sexual pleasure and exclusion in terms of human rights. It argues that human rights aim to safeguard autonomy, which is interpreted as multidimensional. It, thus, divides autonomy into the four dimensions of liberty (freedom from threat and coercion), opportunity (options to choose between), capacity (what an agent is capable of doing) and authenticity (the extent to which choices are genuine). Furthermore, it distinguishes between distinct egalitarian strategies, which offer different problems and possibilities, and may be combined. Thus, there is direct egalitarian distribution, indirect egalitarian distribution, baseline or threshold strategies and general promotion strategies. By way of conclusion, the importance of sexual authenticity as the ultimate aim of sexual rights is emphasised.

Courts, rights and the critically brain-injured patient.

The reality of current clinical practice in the UK is that where a patient's family refuses to agree to testing for brain stem death (BD), such cases will ultimately end up in court. This situation is true of both adults and children and reinforced by recent legal cases. While recourse to the courts might be regrettable in such tragic cases, if public trust in the medical diagnosis of BD is to be maintained all aspects of the process must be conducted in a way that is transparent and open to scrutiny. This is not an 'ineffective expenditure' of resources, but an essential element of a human rights-compliant legal system.

Effect of health rights accessibility on the urban integration of minority rural migrants in China: a cross-sectional study.

BACKGROUND: Accessing health rights is an integral component of people's aspirations for a better life. Existing discussions and evaluations regarding the accessibility of health rights for minority rural migrants are insufficient. In comparison to objective health conditions, inequalities in health rights lead to chronic and long-term depletion of human capital among minority rural migrants. This study aimed to assess the overall impact, heterogeneity effects, and mechanisms of health rights accessibility on the urban integration of minority rural migrants. METHODS: Based on the 2017 China Migrants Dynamic Survey Data (CMDS), this study employs OLS models, 2SLS models, conditional mixed process (CMP) methods, and omitted variable tests to estimate the impact of health rights accessibility on the urban integration of minority rural migrants. Additionally, from the perspectives of migration scope and illness experience, this study explored the heterogeneity in the relationship between health rights accessibility and urban integration. Finally, using the Karlson-Holm-Breen (KHB) model, this study dissects the mechanisms through which health rights accessibility influences the urban integration of minority rural migrants. RESULTS: Health rights accessibility significantly enhances the urban integration of minority rural migrants. Moreover, compared to minority rural migrants who move across provinces and who have no history of illness, those who migrate within the same province and who have experienced illness are more sensitive to the positive impact of health rights accessibility. However, the enhancing effect of health rights accessibility does not significantly differ between the new and old generations of minority rural migrants. Furthermore, health rights accessibility can indirectly improve the urban integration of minority rural migrants by elevating health levels, improving health habits, and reinforcing health behaviors. Among these, the indirect effects mediated by health habits are more pronounced. CONCLUSION: The research conclusions underscore the issue of health accessibility and urban integration among minority rural migrants, providing a reexamination and clarification of the policy effects of health rights in promoting the urban integration of minority rural migrants. Relevant policy design should commence with improving the health rights of minority rural migrants, enhancing their health integration capabilities, and effectively boosting their ability to integrate into urban life.

Socio-ecological factors of girl child marriage: a meta-synthesis of qualitative research.

BACKGROUND: Child marriage of girls is one example of human rights violations, and is increasingly recognized as a key obstacle to global public health. Given the importance of a comprehensive understanding of the motivations for child marriage, this study aimed to identify socio-ecological factors contributing to gills child marriage. METHODS: A comprehensive search was conducted of all English-language studies measuring causes of child marriage between 2000 and October 2022 in the Web of Science, PubMed, Scopus, PsycInfo, ProQuest, Poplin and Google Scholar databases. Girl child marriage is defined as a marriage under the age of 18. In this study, the CASP evaluation checklist was used to collect data. Two independent reviewers reviewed all articles. RESULTS: A total of 34 eligible qualitative articles were included. The most salient causes of child marriage among girls include low skills and knowledge, internal and external beliefs and motivations, and physical advantages at the individual level. Family characteristics and structure contribute to child marriage at the interpersonal level, while environmental and economic factors play a role at the community level. Social factors and cultural norms, as well as the shortcomings and weaknesses of legislation, are also contributing factors at the society level. CONCLUSION: The results showed that cultural beliefs supporting gender inequality and economic status were the most important causes of child marriage. These results can help policymakers and decision-makers implement strategies to reduce gender inequality to prevent child marriage.

Good practice in reaching and treating refugees in addiction care in Germany - a Delphi study.

BACKGROUND: Health and adequate access to health care are human rights. Refugees are at risk for substance abuse. Despite the known structural and personal risk factors for abuse, refugees in Germany continue to face barriers to adequate addiction prevention and care, which is a violation of the fundamental human right to health care. The question arises as to how barriers for refugees in reaching addiction services and care can be overcome. In the presented study, strategies for good practices to deconstruct these barriers were identified. METHOD: A total of 21 experts participated in a three-round, consensus-oriented Delphi-Process. The experts represented five different fields: addiction care services, including specialized programs for women, refugee aid services, academia, policy-making and immigrants' self-help services. RESULTS: The Delphi-Process generated 39 strategies of good practice summarized in 9 major categories: Care System, Framework Conditions, Multilingualism, Information and Education, Access, Service-Level, Employee-Level, Employee-Attitudes and Networking. CONCLUSION: In order to guarantee human rights regarding health and adequate access to health care for refugees, institutional barriers limiting access to prevention and treatment programs for addictive disorders must be abolished. The identified good practice strategies for Germany, if widely implemented, could contribute to this aim. By opening up prevention and treatment facilities for refugees, other marginalized groups could also benefit. While some of the strategies need to be implemented at the institutional level, political steps are also required at the system level including, e.g. financing of adequate translation services.

OPCAT: How an international treaty regarding torture is relevant to the Australian mental health system.

The United Nations Subcommittee on the Prevention of Torture visits signatory nations to the Optional Protocol to the Convention against Torture and other Cruel, Inhuman or Degrading Treatment or Punishment (OPCAT). Its role is to monitor and support signatory nations in implementing and complying with the Convention against Torture and other Cruel, Inhuman or Degrading Treatment or Punishment (CAT). In October 2022, the United Nations Subcommittee on the Prevention of Torture visited Australia but was barred from visiting mental health wards in Queensland and all detention facilities in New South Wales leading to the termination of its visit. This breach of Australia's obligations under the OPCAT presents a significant setback for the rights of people with mental illness and other involuntarily detained populations. This piece sets out to demonstrate the relevance of OPCAT to the mental health system in Australia. Individuals who are detained for compulsory treatment in locked facilities such as acute psychiatric inpatient wards and forensic mental health facilities are deprived of their liberty, often out of public view. Thus, it highlights the ethical and professional obligations of all mental health professionals, especially psychiatrists, to safeguard the human rights of individuals being detained in mental health facilities as enshrined in Australia's international legal obligations under the OPCAT. Adhering to these obligations diminishes the risk of future human rights violations of people with mental illness.