Privacy, Personhood, and Property in the Age of Genomics

Abstract

Revolutions in genetic technology have heralded the age of population-scale genomic metadata. This article analyzes the tensions and gaps between traditional conceptions of personhood and international legal responses to a person's right over disembodied data obtained from his/her body. The opportunities for breakthroughs in healthcare by interrogating population-scale genomic databases are accompanied by questions about privacy, property, dignity, and the nature of information regulation in a global economy. This article highlights instances where law and policy makers have grappled with these challenges, and foreshadows some emerging future challenges. It also highlights differences between jurisdictions, and calls for greater global participation in the development of a coherent framework, rather than continued reliance on a small number of stakeholders, to develop that framework.

Human Genetics Society of Australasia Position Statement: Use of Human Genetic and Genomic Information in Healthcare Settings

“…In Australia, there is currently no clear legal position to answer these issues and therefore legal ownership of genetic information remains uncertain (Bonython & Arnold, 2015). In New Zealand, it is not clear whether a biological sample has any legal status once separated an individual (Te Aka Matua o te Ture Law Commission, 2018).…”