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A landmark collaborative initiative between organisations in Europe, Africa and Asia, the EU-funded TRUST project directly addresses the challenges of so-called ‘ethics dumping’ in which practices that would be ethically unacceptable in Europe are used in low- and middle-income countries where strong legal frameworks and ethics compliance mechanisms may be lacking.
“In the 21st century, research relationships should be free of exploitation,” says TRUST coordinator Doris Schroeder, director of the Centre for Professional Ethics at the University of Central Lancashire in the UK. “Nobody should take part in research unless they have understood the purpose of the project and have agreed to contribute voluntarily: research participants need to be involved equitably.”
With scientific research becoming increasingly globally dispersed, the risk of ethics dumping is particularly high when researchers from high-income countries conduct studies in low- and middle-income countries in any scientific discipline, from medical research and natural sciences to the social sciences and humanities.
Practices defined as ethics dumping include carrying out research without ethical approval or insurance for harm that may occur during a study, exporting research samples such as blood or DNA without local authorisations, disregarding privacy concerns, exploiting vulnerable populations, or providing an inadequate standard of care in a clinical trial.
A voice for the vulnerable
The TRUST project aims to prevent such practices, especially by giving vulnerable populations a voice and a central role in deciding how research should be conducted and used.
For example, the TRUST team supported the development of the first code of ethics by an indigenous population in Africa. The San of southern Africa, one of the world’s oldest populations of humans, now have their own rules for researchers wishing to study their community and people. This has brought to an end more than a century of being measured, photographed, scrutinised and often exploited by researchers with little benefit to the people themselves.
This work, in turn, has contributed to development by the TRUST team of the first comprehensive global code of conduct to guide researchers from high-income countries when they undertake work in low- and middle-income settings. It has been drawn up with input from diverse populations around the world, including the San community and sex workers from Majengo, a low-income neighbourhood of Nairobi, Kenya, among other groups.
TRUST’s Global Code of Conduct for Research in Resource-Poor Settings promotes long-term, equitable research partnerships based on fairness, respect, care and honesty while addressing ethics dumping by opposing double standards in research. The European Commission’s Ethics and Research Integrity Sector in the Directorate-General for Research and Innovation intends to propose the code as a reference document for future research projects seeking funding under the EU’s Framework Programmes for research and innovation.
The code was launched globally by TRUST coordinator Doris Schroeder and San spokesperson Leana Snyders at a meeting of the Leadership Council of the Sustainable Development Solutions Network in Stockholm on 15 May 2017. It will also be presented to the European Parliament in an event on 29 June 2018 featuring keynote speaker professor Jeffrey Sachs.
Implementation of the code of conduct in research practice is supported by a Fair Research Contract toolkit developed by members of the TRUST consortium. This toolkit helps administrators, researchers and legal advisors in low- and middle-income settings to achieve equitable research contracts in collaboration with research teams from high-income settings. Freely accessible online tools provide up-to-date information, links and references to help users understand the factors underpinning an equitable and transparent research partnership.
“The resources developed by TRUST aim to catalyse significant improvements in adherence to high ethical standards worldwide, leading to an inclusive and sustainable research culture,” Schroeder says. “The Europe 2020 vision outlines a vision of Europe as an economy that is smart, sustainable and inclusive. The aim in the short term is for EU-funded research conducted outside the EU to avoid double standards. Longer term, the ambition is to achieve a global culture of research integrity to support research and innovation directed towards humanity’s challenges.”