Ethics Dumping ― Case Studies from North-south Research Collaborations

This book is published under a CC BY 4.0 license.

This book provides original, up-to-date case studies of “ethics dumping” that were largely facilitated by loopholes in the ethics governance of low and middle-income countries. It is instructive even to experienced researchers since it provides a voice to vulnerable populations from the fore mentioned countries. Ensuring the ethical conduct of North-South collaborations in research is a process fraught with difficulties. The background conditions under which such collaborations take place include extreme differentials in available income and power, as well as a past history of colonialism, while differences in culture can add a new layer of complications. In this context, up-to-date case studies of unethical conduct are essential for research ethics training.

Doris Schroeder, whose background is in philosophy, politics and economics, is Director of the Centre for Professional Ethics at the University of Central Lancashire (UCLan) in the UK, Professor of Moral Philosophy in the School of Law at UCLan Cyprus, and Adjunct Professor at Charles Sturt University in Canberra, Australia. Professor Schroeder has published and led large international research projects on benefit sharing, responsible research and innovation, and global research ethics. Her conceptual work in ethics focuses mostly on the human right of access to health care, dignity and vulnerability.

Julie Cook Lucas has a background in national health promotion in the British National Health Service (NHS), and award-winning national campaigning around women’s health and environment issues in the voluntary sector. She co-founded the UK's first certificated course on ecofeminism at Birkbeck College, University of London in 1994. She worked in the anti-vivisection and pro-choice movements before carrying out postgraduate research into the tensions between activism and academia, theory and practice, in the Philosophy Department at the University of Lancaster. She worked at local level providing women’s health services, and as a community representative around reproductive health/maternity issues and user representation in NHS service development before joining UCLan’s Centre for Professional Ethics in 2005. She has contributed to a range of EC-funded projects around international justice and ethics in health, and science and technology, specializing in gender and consent issues. Since 2014 Julie has been deputy manager of UCLan’s Faculty of Health & Wellbeing’s academic Research Support Team and is Good Clinical Practice certified. She is Chair of the Faculty’s Early Career Researchers’ Forum.

Francois Hirsch graduated in Immunology at the Institut Pasteur and holds a certificate in Science and Medical Ethics from Paris-Sud University; he is senior Research Director at the Institut National de la Sante et de la Recherche Medicale (Inserm) in Paris. After 20 years as an immunologist in different research units, he spent 3 years as Seconded National Expert at the Unit 'Governance and Ethics' in the Directorate General for Research of the European Commission (EC) in Brussels where he helped organizing the ethics review of research proposals, with a special focus on research conducted in low and middle income countries (LMICs). Back at Inserm, Francois Hirsch became deputy director of the Office for Clinical Research and secretary general of the Inserm Ethics committee. Recently, he moved to the Institute for Health Technologies where he is in charge of regulatory governance and ethics. He runs an international initiative (HTech4Dev) aimed at facilitating the transfer of health technologies to LMICs. He frequently acts as expert to evaluate the ethics of projects funded under FP7 and H2020, including those funded by the European & Developing Countries Clinical Trials Partnership (EDCTP). In addition to his participation in several national ethics bodies, he participates in the H2020 project “Creating and enhancing trustworthy, responsible and equitable partnerships in international research (TRUST)”, which aims at providing the EC with recommendations for more equitable research partnerships between the North and the South. This book is part of TRUST.

Solveig Fenet studied political science and international relations at the University of Montreal and obtained her Master’s degree in European Studies at the University Paris-Sorbonne. Before joining the Institut National de la Sante et de la Recherche Medicale (Inserm) as a researcher, Solveig was an analyst at the French Development Agency (AFD) assessing the management performance of water and electricity companies in sub-Saharan Africa and a junior consultant for European public funds and financial instruments at the consulting agency Welcomeurope. While enrolled for a Master’s degree in ethics, Solveig now works at Inserm as a deputy project manager for ethics missions.

Vasantha Muthuswamy recently retired as Senior Deputy Director General of the Indian Council of Medical Research (ICMR) New Delhi after three decades of service in different capacities. She also held the post as the ICMR's Chief of Division of Basic Medical Sciences, Traditional Medicine & Bioethics and Chief of Division of Reproductive Health & Nutrition. A WHO Fellow at the Kennedy Institute for Ethics, Georgetown University, Washington DC, she is internationally recognised for publishing the ICMR’s “Ethical guidelines for biomedical research on human subjects “ in 2000 and the revised version “Ethical guidelines for research on human participants” in 2006. She has been involved in the preparation of many national and international ethics guidelines. As the Founder Secretary of the Forum for Ethics Review Committees in Asia Pacific (FERCAP) for ten years, she has been a facilitator in Bioethics and good clinical practice (GCP) workshops in more than 30 countries since 2000. She is currently the President of the Forum for Ethics Review Committees in India (FERCI) and therefore involved in training of ethics committee members and the accreditation of ethics committees in India. She is currently entrusted with a revision of ICMR guidelines which will be released before the end of 2016.