‘Benefits’ in exchange for your blood?

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.