ABSTRACT

While most discussions about the ethics of biomedical research involving human subjects agree that there is a need for it to take place, they also accept the significance of protection for human subjects to ensure their wellbeing and to avoid abuse and exploitation. 1 The requirements of consent, based on the principle of respect for autonomy, have become central measures for the protection of human subjects in Western bioethics and law. These requirements have been developed in the medical treatment context and subsequently applied to medical research. This chapter will also introduce the concept of relational autonomy as a challenge to a highly individualised concept of autonomy. The significance of this challenge is in its invitation to consider the social context of even individual decision-making. This will become relevant when discussing the potential for collective harm to target groups in Human Population Genetic Research (HPGR), highlighting the need for an enriched understanding of the requirements for individual decision-making when people are asked to participate in such research.