Normative challenges in data governance: insights from global health research.

Many important questions in health professions education require datasets that are built from several sources, in some cases using data collected for a different purpose. In building and maintaining these datasets, project leaders will need to make decisions about the data. While such decisions are often construed as technical, there are several normative concerns, such as who should have access, how the data will be used, how products resulting from the data will be shared, and how to ensure privacy of the individuals the data is about is respected, etc. Establishing a framework for data governance can help project leaders in avoiding problems, related to such matters, that could limit what can be learned from the data or that might put the project (or future projects) at risk. In this paper, we highlight several normative challenges to be addressed when determining a data governance framework. Drawing from lessons in global health, we illustrate three kinds of normative challenges for projects that rely on data from multiple sources or involved partnerships across institutions or jurisdictions: (1) legal and regulatory requirements, (2) consent, and (3) equitable sharing and fair distribution.

Evaluation of a single-dose HPV vaccine strategy for promoting vaccine, health, and gender equity.

Although several countries have adopted a single-dose human papillomavirus (HPV) vaccination strategy, many other countries continue to include multiple doses in their vaccination programmes. There are ethical reasons to transition to a single-dose strategy. We discuss how a single-dose HPV vaccination strategy advances equity in three dimensions: vaccine equity, health equity, and gender equity. Adopting a single-dose strategy eases pressure on vaccine supply, lowers programme costs, and is easier to distribute. This change facilitates vaccine procurement and implementation programmes (contributing to vaccine equity) and reaching hard to reach people or populations (contributing to health equity). A lower number of cases of HPV-related diseases that stem from greater vaccine distribution reduces the burden on women, who are at a higher risk of HPV-related disease or who act as caregivers, which prevents them from accessing opportunities that contribute to their empowerment (contributing to gender equity). Thus, pursuing the single-dose HPV vaccination programme strategy is ethically desirable.

Access and use of human tissues from the developing world: ethical challenges and a way forward using a tissue trust

Material en inglés, Access and use of human tissues from the developing world: ethical challenges and a way forward using a tissue trust, que analiza los diferentes desafíos éticos que supone el acceso a tejidos humanos para investigación en un contexto en el que no han estado ausentes la explotación y abuso de ciertas prácticas.

Access and use of human tissues from the developing world: ethical challenges and a way forward using a tissue trust.

BACKGROUND: Scientists engaged in global health research are increasingly faced with barriers to access and use of human tissues from the developing world communities where much of their research is targeted. In part, the problem can be traced to distrust of researchers from affluent countries, given the history of 'scientific-imperialism' and 'biocolonialism' reflected in past well publicized cases of exploitation of research participants from low to middle income countries. DISCUSSION: To a considerable extent, the failure to adequately engage host communities, the opacity of informed consent, and the lack of fair benefit-sharing have played a significant role in eroding trust. These ethical considerations are central to biomedical research in low to middle income countries and failure to attend to them can inadvertently contribute to exploitation and erode trust. A 'tissue trust' may be a plausible means for enabling access to human tissues for research in a manner that is responsive to the ethical challenges considered. SUMMARY: Preventing exploitation and restoring trust while simultaneously promoting global health research calls for innovative approaches to human tissues research. A tissue trust can reduce the risk of exploitation and promote host capacity as a key benefit.