Public trust and public bodies: The regulation of the use of human tissue for research in the United Kingdom

Abstract

A primary purpose of regulation is to secure public trust. In the United Kingdom in the 1990s public trust in those who procured, stored and used human tissues for research or other purposes was severely damaged following controversies about the retention and use of post mortem organs and tissue at the Bristol Royal Infirmary and the Alder Hey Royal Infirmary in Liverpool. Pathologists at both hospitals had retained large quantities of tissue and other remains of children without the knowledge and consent of their parents. Reports of unacceptable practices in Bristol and Alder Hey led to major revision of laws and regulation of the use of all human tissue in the context of research and therapy, including the donation and transplantation of human organs. A new regulatory authority, the Human Tissue Authority, was set up. Together with the previously established Human Fertilisation and Embryology Authority these two public bodies have had responsibility for key aspects of the regulation and oversight of human tissue use for research in the United Kingdom. Here we explore their role in securing public trust and confidence in current practices relating to research use of human tissue. These practices include the use of ova, embryos and aborted fetal tissue for stem cell research and most recently the approved use of “human admixed embryos”. We discuss the ethical principles underlying the current policies and legal frameworks in the UK regarding the research use of human tissue and their divergence from other European countries.