Africa is known for its excellent safaris, with tourists flying from around the world, only to leave ‘with barely a hint’ of having been here, writes Professor Keymanthri Moodley of the Centre for Medical Ethics and Law at Stellenbosch University.
Moodley writes in a SA Medical Journal commentary:
It is not surprising that the terms ‘safari research’ and ‘parachute research’ were coined, when foreign researchers did likewise: came to Africa, conducted research on unsuspecting communities, and left, [with local researchers left out of the research process].
What often resulted was a publication … authored by academics from the global north, replete with recommendations on how to do things better in Africa. Sometimes these foreign researchers were junior postgraduate students or research assistants. The paradox is that the reverse scenario … would neither be entertained nor tolerated in the global north.
Mindful of the exploitative nature of such imperialistic research, the South African Ministry of Health instituted measures to end safari research. The South African Good Clinical Practice (SAGCP) guideline made it mandatory that every biomedical research project had to be led by an SA principal investigator resident in the country and that all research in SA had to be approved by an SA research ethics committee (REC) registered with the National Health Research Ethics Council (NHREC).
Notwithstanding a fairly rigorous research regulatory environment in SA, an apparently legitimate research survey was posted in MedicalBrief on 2 September 2020. At first glance, it appeared to be an interesting project initiated by the University of Kent, UK, seeking views of SA healthcare practitioners on abortion access and provision of services in public, private and non-governmental organisations. However, on closer inspection, it appeared as if there were no SA researchers involved and that the research had not been approved by an SA REC.
Ideally, this matter ought to have been investigated by the NHREC. Given that this national body has been non-existent since November 2019, the absence of SA collaborators and the absence of local REC approval were confirmed in written correspondence with the researcher leading the study. The title of the letter in MedicalBrief, ‘University of Kent wants South African input on abortion project’, underscores the colonialist tone of the project. Depleted of a benefit-sharing collaborative spirit, the study promised to ensure unidirectional flow of data out of Africa, once again.
The involvement of local RECs and collaboration with local researchers are important because a study on abortion access has significant potential for harm. Without adequate local contextualisation and input, there is a strong risk of increased harm to patients and service providers from such research, and it is possible that the findings may further limit access to legal abortions in SA.
This attempt has given new meaning to the term ‘safari research’. This time, a new portal to African data has been discovered and exploited. In the current era of online platforms, digital technology has removed the requirement to physically fly into Africa to conduct research. Data can now be extracted via a medical electronic newsletter like MedicalBrief that reaches ~46 000 healthcare professionals in SA!
To maximise recruitment and data collection for the abortion study, the British researchers encouraged generous sharing of the survey on social media. Undoubtedly, electronic data collection and sharing has opened the floodgates for global misuse of research data from the global south.
Unconsented attempts at commercialisation and illegitimate sharing of African genomic data by the UK’s Wellcome Sanger Institute has recently drawn attention to unregulated cross-border transfer of data and the risks inherent in international collaborative research. Likewise, fair and equitable collaborative partnerships require diversity of authorship on publications and diverse representation at scientific conferences. Consequently, there have been numerous calls for the decolonisation of global health research.
Both the SAGCP guideline and the research ethics guidance from the Department of Health are in the process of revision. It is important that these guidelines incorporate ethical and legal issues related to digital health research so that all South Africans – participants, clinicians, academics, REC members, regulators, researchers and medical journal/newsletter editors – are acutely aware of potential loopholes in the system, as has been exposed by the abortion study.
The NHREC plays an indispensable role in guidance development and dissemination, as well as in provision of oversight of RECs. It is therefore incomprehensible that NHREC was not constituted in 2019. SA cannot continue to conduct research in the absence of a national research ethics body that is a crucial governance mechanism for protection of research participant rights.Read the full South Africa Medical Journal commentary