The Significance of UNESCO's Universal Declaration on the Human Genome and Human Rights

Abstract

Modern medical research, particularly genetic research, is changing the nature of medicine. Concerns surrounding these changes and their potential negative impact on human rights led UNESCO to spearhead collaboration by experts in the creation of an international instrument intended to provide guidance for the promotion of bioethics and the protection of human rights in the genetic context. The result was the Universal Declaration of the Human Genome and Human Rights. This article briefly highlights the scientific and social setting into which the Declaration was injected. This is followed by a consideration of the drafting body (the IBC) so as to assess whether UNESCO was the appropriate body to lead this project. The process by which the Declaration was created is also considered so as to assess whether it represents an example of ethical and democratic drafting. Finally, the substantive content of the Declaration is considered and measured against the pre-existing regime so as to assess whether it represents an intelligible and coherent response to the concerns raised capable of offering guidance now and into the future. By assessing these procedural and substantive matters, one can draw some tentative conclusions about the utility and significance of the Declaration. DOI: 10.2966/scrip.020105.20 © Shawn Harmon 2005. This work is licensed through SCRIPT-ed Open Licence (SOL). * Shawn H.E. Harmon, BA (1993), LLB (1996), LLM (2005), has clerked with the Federal Court of Canada and practiced extensively in Nova Scotia as a litigator, primarily in the fields of insurance and tort law. He received his LLM (with distinction) in international law from the University of Edinburgh, and has returned to the University of Edinburgh to both undertake research as a Research Fellow with INNOGEN and to pursue his PhD studies in genetic regulation. (2005) 2:1 SCRIPT-ed 21 [Human] genetics ... is beginning to create a new generation of acute and subtle dilemmas that will in the new millennium transform the ways in which we think of ourselves and of society. It is genetics, bringing both a new understanding of what we are and almost daily developing new ways of enabling us to influence what we are, that is creating a revolution in thought, and not least in ethics. 1