Participants not subjects: A case for research participants to share in profits generated from the use of their genetic material

Abstract

The history of medical research is rife with instances of exploitation and injustice towards research participants. Considering the significant progress made in this field, one would not expect such issues to persist in modern times. However, while benefit-sharing is a widely accepted principle and plays a significant role in ensuring a fair and equitable distribution of benefits arising from the utilisation of genetic resources, human genetic resources remain excluded and not covered by current international regulations and domestic laws. As a result, research participants who contribute their genetic material to medical research are deprived of some benefits that flow from these research projects. This research report illuminates that this practice is immoral, unjust and exploitative because researchers and research sponsors accumulate wealth through the same genetic material. In this report, I take the position that research participants should be entitled to share in profits that result from the use of their genetic material. This is done by providing an evaluative descriptive account of the key ethical issues and conceptions related to benefit sharing, giving a critical and evaluative discussion on this challenge. I will argue using Western traditional moral theories such as deontology and utilitarianism and, ultimately, discussing and giving an Ubuntu- based argument on the issue. This will also position this principle as a needed perspective in understanding the principle of benefit sharing.