The Ethical, Legal and Social Issues of the Governance of Genomic Data
Jasmine Hensley1, University Of Western Australia Crawley 1University Of Western Australia, Crawley, WA, Australia
Abstract
The amount of genomic data produced in Australia is rapidly accumulating, expanding opportunities for genomic research and medical advancements. A significant challenge to effective use of genomic data is the lack of a strong, contemporary, overarching governance framework, which has been recognised as essential in facilitating such use. However, governance of genomic data to enable data sharing faces numerous ethical, legal and social issues (ELSI) which must be effectively identified and overcome.
To address this gap, I am conducting a foundational scoping review, aiming to delineate the relevant ELSI, highlight their importance, and identify underexplored themes across the literature. I searched five databases to identify non-empirical articles that related to data governance in genomics, I then used inductive content analysis in NVivo to analyse the articles.
My search identified 134 peer-reviewed articles. Some of the ELSI prevalent so far include the tension between data sharing to advance biomedical research and privacy, the inherent risk of reidentification of genomic data and consent challenges. Additionally, the lack of international regulatory cohesion, the question of returning results to data contributors and the underrepresentation of Indigenous data in genomic datasets are pervasive topics in the literature thus far.
This work ties into the Law, Sociology and Ethics of Data Governance in Genomics (LINEAGE) project, which is exploring these ELSI to develop governance solutions and build a framework with recommendations and an implementation plan. My findings will pave the way for the LINEAGE team to develop effective governance solutions to the issues identified.
Biography
Bio to come