The Human Genome Organisation: towards next-generation ethics

Abstract

Ten years after the completion of the human genome [1], looking back over the policy statements of the Human Genome Organisation's (HUGO) Ethics Committee (EC) and of its Intellectual Property Committee (IPC) is more than just a trip down memory lane; it is the revelation of a seismic shift in the values underlying genomic research (Table ​(Table1).1). Founded in 1992 at the inception of the Human Genome Project, HUGO not only provided prospective scientific leadership on approaches to intellectual property, but also on ethical, legal and social issues. Indeed, the Statements constitute a harbinger of policy debates that persist today. Table 1 List of HUGO Statements In the past two decades, genetic research ethics has expanded rapidly from a domain seemingly 'ungoverned by any explicitly ethical or legal norms', to a rich and sophisticated field [2]. Initially, the concerns of the EC and IPC were to ensure participant autonomy through informed consent, respect for participant privacy and confidentiality in light of the sensitive nature of genetic information, and an equitable distribution of the burdens and benefits of genetic research. These concerns are prevalent throughout the HUGO Statements, even as the focus of genetic ethics has shifted from the protection of individuals, families and communities, to considering the broader interests of society, and international harmonization.