By Jen Whittingham
Researchers, scientists, ethicists, lawyers, and policy makers gathered in the Public Health Auditorium of Wits University to convene the ‘1st South African Conference on Gene Editing’ exploring the scientific, ethical, legal, and policy issues associated principally with human gene-editing research to set the stage for the development of a coherent regulatory framework for South Africa.
With the creation of CRISPR/Cas 9 in 2012 (a technique that allows scientists to make precise edits to any DNA by altering its sequence), ethical questions are being asked about the rightful place of science in governing the future in democratic societies.
Key discussions at the conference focused on distinguishing between somatic gene editing, where the technology is used on target cells and changes are not passed on to offspring, and germline gene editing, where the technology is used on an embryo, passing on all changes to offspring. This distinction alters the nuances of the ethical debate and emphasizes our responsibility to future generations; we must ensure that benefits are passed on, while risks are minimised. This led on to discussions about the need to distinguish between good and bad uses of gene editing early on in order to prevent research going in the wrong direction (primarily characterised as gene-editing for enhancement rather than public health goals). This, however, incites questions about who gets to decide on what research is/isn’t worthy and raises concerns that this technology holds the potential to further entrench health inequalities.
The notion of global regulatory harmonisation was interrogated. It was established that a global minimum standard would minimise the establishment of risk havens, but this would need to be approached so as not to impinge on national sovereignty. Further, in the context of the global South and South Africa in particular, national regulatory processes on gene editing should engage critically with the global conversation, remaining mindful that the current and global trajectory is not apolitical but a product of the coloniality of knowledge that has already established unequal knowledge and power relations globally.
While equality and justice were presented as central to the regulation of this technology, the practicalities of how this might be implemented were not extensively discussed. These concerns were voiced in concert with an air of inevitability calling for the need to accommodate the rapid commercialisation of CRISPR/Cas9 through the supply of facilities, learning materials, and commercial-academic partnerships. The issue of intellectual property rights in terms of equity and justice was absent from these discussions. This issue provokes wide-ranging uncertainties about the appropriate place for and scope of intellectual property protections, specifically in the context of Africa, which holds the highest human genetic diversity globally (Jorde et al 2000).
Being able to ensure scientific freedom, whilst ensuring science is utilised for the public good raised questions about whether scientific progress and research integrity can run in parallel. Ethical scientific integrity was deemed vital in moving forward, meaning that ethical clearance can’t simply be ticking a box and signing a form. Scientific integrity and responsibility must be enshrined in the ‘doing’ of science from beginning to end.
The rhetoric of ‘excitement’, ‘hope’, and ‘fear of missing out’, to ensure that South Africa ‘reaps the benefits’ is reminiscent of the promise of GMOs. However, the lessons to be learned from the intense adoption of GMOs in South Africa were seldom cited in the meeting. These include the danger of commercial interest seeping into the process of regulatory harmonisation, and the pro-poor narrative that legitimises ‘ethics dumping’ and the imposition of uncertain, emerging technology that hasn’t yet been established as safe, nor socially or economically beneficial. Yet these potential lessons were not drawn upon, indicating a myopic view of how this technology may play out in South Africa.
Moving forward, the World Health Organisation (WHO) is in the process of establishing an expert advisory committee chaired by the South African former Constitutional Court Judge Edwin Cameron and Margaret Hamburg, head of the American Association for the Advancement of Science, to develop global governance recommendations for human genome editing. This is accompanied by the acknowledgement that decisions around whether or not to proceed with the application of this technology are both scientific and ethical and cannot be decided by science alone, requiring the voices of various stakeholders to be included in the research enterprise. The South African MRC (Medical Research Council) closed the meeting by restating its commitment to funding research for the public good, emphasizing that if innovation comes from public money, public citizens must benefit.
Jorde, L. B., Watkins, W. S., Bamshad, M. J., Dixon, M. E., Ricker, C. E., Seielstad, M. T., & Batzer, M. A. (2000). The distribution of human genetic diversity: a comparison of mitochondrial, autosomal, and Y-chromosome data. American Journal of Human Genetics, 66 (3), 979–988. doi:10.1086/302825