Social justice and research using human biological material: A response to Mahomed, Nöthling-Slabbert and Pepper

Abstract

Social justice in the context of research using human biological material is an important contemporary legal-ethical issue. A question at the heart of this issue is the following: Is it fair to expect a research participant (a person who participates in such research by, among others, making available biological material from his or her body) to  participate on an altruistic basis, while the researchers and the investors in the research can gain commercially from the research? In a recent article,  Mahomed,  Nöthling-Slabbert and Pepper proposed that research participants should be entitled to share in the profits emanating from such research via a proposed new statutory right to the intellectual property emanating from such research. In order to stimulate debate on this important issue of social justice, this article responds to the position of Mahomed et al. by focusing on two main points: Firstly, I contend that Mahomed et al. fail to make a convincing argument in favour of shifting away from altruism; secondly, I caution against framing the debate in terms of the binary poles of altruism v. profitsharing, and suggest that should healthcare public policy ever move away from altruism, various  non-monetary forms of benefit-sharing by research participants should be considered.