The issue of ‘benefit sharing’ with research participants is mired is controversy. In conventional ethics, donating biological specimens and personal data to scientific research is viewed as a selfless act aimed at promoting the greater good. However, proponents of ‘benefit sharing’ argue that scientific research is a lucrative business and that considerations of distributive justice demand that research participants who donate their biological specimens and personal data to scientific research projects should receive ‘benefits’ in return. But would such ‘benefit sharing’ not risk turning research participation into a commercial activity that undermines the dignity of the human body? And would the promise of receiving a ‘benefit’ not compromise individuals’ autonomy to decide based on their own authentic values whether to participate in research? Accordingly, the social harm of practicing ‘benefit sharing’ may be most harshly felt in poverty-stricken communities.

There are also economic policy arguments that are relevant: While international pharmaceutical companies certainly make fortunes from their scientific research, the same is not true of local universities and biotech startups. As such, while international pharmaceutical companies may easily be able to afford giving all kinds of ‘benefits’ to their research participants, this is likely to create expectations among research participants that local universities and biotech startups would not be able to compete with. This will put a damper on South Africa’s aspirations to build a local bio-economy. In the long term, building a vibrant and sustainable bio-economy is key to South Africa’s participation in the Fourth Industrial Revolution and lifting our people out of poverty.

Importantly, South African law presently outlaws ‘benefit sharing’ with research participants in research projects that entail donation of biological specimens. This decision by South Africa’s democratically elected parliament should be respected by all involved in research in South Africa.

The idea of genomic sovereignty entails that a nation state should control the genomic resources found in its territory as a national asset. This is established international law in the context of non-human genomic resources. However, some have argued that it should also be applied to human biological samples and genomic data. This raises some serious human rights concerns. In Mexico, the idea of genomic sovereignty was indeed applied in public policy on human genomic data. In our recent article, Dr Faith Kabata and I compare Mexico’s public policy experiment with a different approach, namely that of Finland. In contrast with the state-centred nature of genomic sovereignty, the approach adopted by Finland embraces private ownership of genomic data by local biobanks, subject to control of such data by the individual data subjects themselves. We suggest that this approach is more promising than genomic sovereignty, as it better aligns with the rights of individuals — in particular their right to participate in and benefit from scientific progress and its applications.

Genomics research holds the potential to improve healthcare. Yet, a very low percentage of the genomic data used in genomics research internationally relates to persons of African origin. Establishing a large-scale, open access genomics database of South Africans may contribute to solving this problem. However, this raises various ethical concerns, including privacy expectations and informed consent. In this article, Amy Gooden and I show how the ethics landscape can indeed be navigated in a responsible way to establish a large-scale genomics database of South Africans that is open access.