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.

Commentary: Cautionary Notes on Exemption Elimination.

A flourishing democracy should have a great deal of space for a wide range of beliefs and practices. The issue of vaccine hesitancy requires that we have as much data and information as possible in order to determine the precise point at which those beliefs and practices may endanger others or the population as a whole. Imposing restrictions before determining that point is about power rather than protection, and ultimately alienates portions of the population.

Female leadership raises aspirations and educational attainment for girls: a policy experiment in India.

Exploiting a randomized natural experiment in India, we show that female leadership influences adolescent girls' career aspirations and educational attainment. A 1993 law reserved leadership positions for women in randomly selected village councils. Using 8453 surveys of adolescents aged 11 to 15 and their parents in 495 villages, we found that, relative to villages in which such positions were never reserved, the gender gap in aspirations closed by 20% in parents and 32% in adolescents in villages assigned a female leader for two election cycles. The gender gap in adolescent educational attainment was erased, and girls spent less time on household chores. We found no evidence of changes in young women's labor market opportunities, which suggests that the impact of women leaders primarily reflects a role model effect.