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Item type:Publication, Additional file 2 of governance frameworks for COVID-19 research ethics review and oversight in Latin America: an exploratory study(Figshare (United Kingdom), 2021-01-01)Additional file 2. COVID-19 and general human research ethics governance documents. - Some of the metrics are blocked by yourconsent settings
Item type:Publication, Research priority-setting is an ethics exercise: Lessons from the Global Forum on Bioethics in Research for the Region of the Americas(Pan American Health Organization, 2024-01-01)To the Editor: - Some of the metrics are blocked by yourconsent settings
Item type:Publication, The Ethics of Online Data Collection: Reflections on Key Informant Interviews Researching the Impacts of COVID-19 on Migrants in Latin America(2023-03-22)While most borders in Latin America were closed during the COVID-19 pandemic, the dynamics of mobility and immobility in the region did not stop. In this extreme context, there was a growing need to understand how the pandemic impacted migrant and refugee populations, as well as the long-lasting effects of measures implemented to mitigate its effects. With many migrants facing exacerbated conditions of vulnerability and with new working modalities affecting all members of society, especially those who were key respondents to protect migrants in the first year of the pandemic, key ethical questions emerged about how, when and where, should research be conducted. This paper reflects on the ethical challenges we faced – such as interviewees' research fatigue, negotiation of access, researcher’s positionality and the strategies to create rapport – and the methodological decisions we made in the context of a regional project that conducted online interviews with governmental and non-governmental actors working with migrants between June and August 2020. - Some of the metrics are blocked by yourconsent settings
Item type:Publication, Governance of Research Involving People With Psychosocial Disabilities(F1000 Research Ltd, 2023-01-01)Health-related research with human participants is governed by research ethics regulations in most jurisdictions. Globally, the 2016 International Ethical Guidelines for Health-related Research Involving Humans, published by the Council for International Organizations of Medical Sciences (CIOMS), are especially influential and widely held as an international standard. The CIOMS guidelines support the inclusion of people with psychosocial disabilities in research and offer clear guidance to promote their recruitment, including by outlining provisions for substitute decision-making. The CIOMS guidelines sit alongside the United Nations’ Convention on the Rights of Persons with Disabilities (CRPD). Adopted in 2006 and ratified in 2008, the CRPD offers a robust framework for recognizing the rights of persons with disabilities, including individuals with psychosocial disabilities. Though the CRPD does not explicitly reference research inclusion, its core principles—especially pertaining to the right to universal legal capacity—have clear implications for research ethics governance, specifically with respect to the use of substitute decision-making for research participation. In this paper, we review the extent to which existing research ethics regulations across selected jurisdictions concord with each of these two frameworks, offering first a broad analysis of regulations across 26 African countries, and then exploring two country-specific case studies from Malaysia and Peru. We find that, while many countries’ research ethics regulations align with key aspects of the CIOMS guidelines, core principles of the CRPD are absent. Given the shortcomings of existing regulations, we analyse a key point of tension between CIOMS and the CRPD—the right to participate in research—and offer a proposal for revised regulations that aims to bridge this tension and meet the standards of both frameworks.