Clinical studies in high income settings can struggle to recruit the target number of participants but for people in low income settings, enrolment in a clinical study may provide the only possible access to quality healthcare. In some situations, participation is used as a source of income generation, as occurs when healthy volunteers enrol in multiple trials, sometimes simultaneously . When perceived benefits from participation in research are coupled with poverty-related issues such as illiteracy, low levels of medical comprehension, no access to legal systems for redress, and precarious local research governance structures, the risks for exploitation can be substantial.
‘Ethics dumping’ is the term used to describe research activities in foreign countries that would be prohibited in the researcher’s home country. Sometimes ethics dumping results from a deliberate attempt to exploit lower research governance standards; like when a scientist elects to conduct experiments on non-human primates in Kenya that would be illegal in their home EU country . Or it might occur because of the researcher’s ignorance of local spiritual beliefs, customs or requirements in the foreign country; like when local beliefs about the sanctity of human blood mean that genetic screening which uses blood, may be viewed as an affront to the sacred aspects of life . Whatever the cause, the result of ethics dumping is exploitation, and the risks for exploitation are not limited to individual participants. An EU-funded project, TRUST, identified 88 specific risks for the exploitation of individuals, communities, institutions, animals and environments .
Local communities can take measures to protect themselves against ethics dumping, like the San indigenous peoples of Southern Africa. Because of their unique genetic properties, the San are in high demand as a research population. Following a long history of exploitation, they developed the San Code of Research Ethics and now, researchers who wish to work with the San must adhere to this code.
However, we cannot rely simply upon actions at a local level to eradicate ethics dumping; global problems require global solutions. Hence, the primary aim of the TRUST project was to develop a global code of ethics that applies across all disciplines and focusses specifically on situations when researchers from high income settings undertake work in low- and middle-income countries.
The Global Code of Conduct for Research in Resource-Poor Settings (GCC) fills a niche which no other code has occupied before. It consists of 23 clear articles that help funders, researchers, communities and individuals to recognise and address potential ethical pitfalls. It emphasises that local communities must be involved in research in meaningful ways, right from the start, and that the end results must provide benefits locally. Any research that uses biological materials and associated information such as genetic sequence data should clarify to participants the potential monetary and non-monetary benefits that might arise, and a culturally appropriate plan to share benefits should be agreed to by all relevant stakeholders.
The GCC was recently adopted by the European Commission as a mandatory reference document for applicants to Europe’s biggest research fund: Horizon 2020 and the forthcoming Horizon Europe, ensuring its lasting impact on the practice of ethics dumping.
Dr Kate Chatfield is the Deputy Director for the Centre of Professional Ethics at the University of Central Lancashire (UCLan)
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Chatfield K, Morton D, The Use of Non-Human Primates in Research. In: Schroeder D et al. (eds) Ethics Dumping, SpringerBriefs in Research and Innovation Governance. Springer:Cham, 2018
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Chatfield K et al., Generic Risks of Exporting Non-ethical Practices, a Report for TRUST. 2016; available at http://trust-project.eu/ deliverables-and-tools/RisksMatrix.