A principled approach to cross-sector genomic data access

Abstract

Genomic data is growing in importance as scientific knowledge and technology develop, and in availability, as direct-to-consumer genomic health testing and recreational genealogy services become more widely utilized. Access to genomic data needs to be considered in light of individual privacy. Cross-sector use of genomic health and ancestry data, and by law enforcement in particular, raises ethical questions and requires appropriate regulation. This article discusses the significance of genomic data and focuses on investigative genetic genealogy, namely the use of genomic health and ancestry data to advance law enforcement, as an example of cross-sector use. An ethical framework is developed that contributes to a more principled approach to genomic data access.