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Abstract

REACH is an empirical research ethics study in global health, now in its fourth and final year. In this project we set out to address important gaps in research ethics guidance for those working with vulnerable populations in low resource, high disease burden settings typical of much of global health research. At the heart of the study are six qualitative case studies, where our bioethics teams were linked to or embedded within ongoing clinical research studies in coastal Kenya, KwaZulu-Natal, South Africa, and in the rural border regions of Thailand. The bioethics teams engaged research teams throughout daily research over time, to better understand what ethical issues arise along the typical research pathway—from study design, to post-study activities. We also engaged research participants and community members to better understand experiences of daily challenges in their own words, sources of specific vulnerabilities, sources of support, and how these manifested in research participation. Findings across these diverse sites help illuminate significant blind spots in how research ethics has traditionally thought of ‘vulnerability’ as an ethical concept, with implications for the practical ethical obligations of researchers working in low resource settings. I will share highlights on behalf of our team, including implications for how we think about ancillary care duties, moral distress, research benefits, and the intersectional nature of vulnerability and respect for agency. I will also offer reflections on the ethical role of research in low income settings—including its purpose and limits as a substitute for health systems development or humanitarian interventions. 

Forthcoming events

Richard Doll Seminar: Design and analysis of prevalence surveys in low-resource settings

Tuesday, 25 February 2020, 1pm to 2pm @ Richard Doll Lecture Theatre, Richard Doll Building, Old Road Campus, OX3 7LF

WEH/Ethox Seminar

Wednesday, 26 February 2020, 11am to 12.30pm @ Seminar room 0, Big Data Institute, Old Road Campus, OX3 7LF

HERC Seminar: Learning healthcare systems for cost-effective precision oncology.

Thursday, 27 February 2020, 12pm to 1pm @ Seminar room 0, Big Data Institute, Old Road Campus, OX3 7LF

The Global Response to the Novel Coronavirus (SARS-CoV-2) Outbreak

Thursday, 27 February 2020, 2.30pm to 4pm @ Seminar rooms, Big Data Institute

Richard Doll Seminar: The Risk of Everything – using linked electronic health records to develop and validate risk prediction tools for use in clinical care

Tuesday, 03 March 2020, 1pm to 2pm @ Richard Doll Lecture Theatre, Richard Doll Building, Old Road Campus, OX3 7LF

WEH/Ethox Seminar: Building research capacity through North-South Partnerships: some ethical reflections and a social justice agenda

Wednesday, 04 March 2020, 11am to 12.30pm @ Seminar room 0, Big Data Institute, Old Road Campus, OX3 7LF