ABSTRACT

In Chapter 1 I suggested that whilst moral and legal principles may have a settled ‘core’ meaning, their interpretation and application at the boundaries may be uncertain, particularly in disputed contexts. Chapter 2 highlighted the theoretical difficulties in identifying universal principles on therapeutic and non-therapeutic research. At the same time, the specification of a principle need not necessarily be disputed and controverted. Often there is consensus and agreement on the specification of a substantive norm or right and its reach in a particular context,1 in which case the question turns to whether the remedies offered by human rights instruments offer a higher degree of protection than domestic law to an applicant. This chapter focuses on this question in relation to the rules on ‘consent’ contained in the Council of Europe’s Convention on Human Rights & Biomedicine (CHRB) and their application to non-therapeutic research, where arguably the ‘core’ meaning of the related underlying principles of respect for individual autonomy and bodily integrity are not in dispute, but where questions arise instead in respect of the degree of protection offered by the CHRB. By comparing Convention principles with domestic UK, Canadian and US civil law on the protection of participants in non-therapeutic research, it is possible to determine whether the Convention offers a higher or lower level of protection. The analysis specifically focuses on the Porton Down experiments in the UK and compares the civil remedies available under domestic law with the litigation surrounding the radiation experiments in the US. I highlight the weaknesses of the tort system as against judicial acknowledgment of the fundamental nature of the rights to autonomy and bodily integrity and their constitutional protection in the US. I conclude with an examination of the strengths and weaknesses of European Human Rights law, and highlight some significant differences between the European Convention on Human Rights (ECHR) (1950) and the CHRB (1997).