Genomics

'In Genes We Trust: Genetic Privacy in the Age of Precision Medicine' by Dean Southwood in Marc de Leeuw and Sonja van Wichelen (Eds) Personhood in the Age of Biolegality (Springer, 2020) 167-183 comments Rapid development in the area of precision medicine in recent decades has prompted a number of questions and concerns, despite its high promises. The field is charting new territory, not just for medicine but for law and ethics as well. The legal frameworks surrounding the use and abuse of genetic data and genetic privacy are troublingly thin, and an onslaught of personal genetic data seems just around the corner. A move toward collecting troves of previously unknowable personal data has also prompted questions around ethical ideas of legal and digital personhood. A deeper analysis into questions of law, ethics, and science needs to be done in order to identify and advocate for change in the legal sphere, and therefore preempt some of the main concerns surrounding precision medicine. A starting point for this analysis is a comparative review of the current legal frameworks dealing with genetic privacy across a number of Western jurisdictions. This then motivates a number of central questions around the ‘right to know’ certain genetic information and the levels to which this information should be disclosed to third parties.