Balancing benefits of human genetic research against civic concerns: Essentially Yours and beyond – the case of Australia

Abstract

Large human genetic databases, especially those that are biomedical and forensic, have emerged since the completion of the Human Genome Project. However, this development has occurred in a time of intense public ambivalence to life science and genomics innovations. Controversies revolve around genetic modification, stem cell technologies and human genetic databases. Debate about databases focuses on how to balance the benefits from genetic research against civic concerns, typically, privacy and unfair discrimination and, more recently, public trust. In 1989, Australian jurisdictions began developing regulatory standards for human genetic databases but from the start these lacked uniformity and adequate scope. Enduring concerns led to a widescale public inquiry (2001–2003), which produced the Essentially Yours report. However, while the Australian government supports many of the report’s recommendations, civic concerns remain as policy responses are checkered. In this special report, we reflect on the debate, the rise of the inquiry, its recommendations and policy responses, and competency and trust in regulation.