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. 2024 Jun;31(2):258-272.

Moving Genomics into the Clinic: Platforms for Implementing Clinical Genomic Data-Sharing in Ways That Address Ethical, Legal and Social Implications

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  • PMID: 38963246

Moving Genomics into the Clinic: Platforms for Implementing Clinical Genomic Data-Sharing in Ways That Address Ethical, Legal and Social Implications

Dianne Nicol et al. J Law Med. 2024 Jun.

Abstract

This section explores the challenges involved in translating genomic research into genomic medicine. A number of priorities have been identified in the Australian National Health Genomics Framework for addressing these challenges. Responsible collection, storage, use and management of genomic data is one of these priorities, and is the primary theme of this section. The recent release of Genomical, an Australian data-sharing platform, is used as a case study to illustrate the type of assistance that can be provided to the health care sector in addressing this priority. The section first describes the National Framework and other drivers involved in the move towards genomic medicine. The section then examines key ethical, legal and social factors at play in genomics, with particular focus on privacy and consent. Finally, the section examines how Genomical is being used to help ensure that the move towards genomic medicine is ethically, legally and socially sound and that it optimises advances in both genomic and information technology.

Keywords: consent; data-sharing; ethics; genomic data; genomics; privacy; research.

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Conflict of interest statement

Nicol and Otlowski are supported by a grant from the Australian Research Council, DP180100269. The Melbourne Genomics Health Alliance is supported are supported by the Victorian Government Department of Health and Human Services (www.dhhs.vic.gov.au/).

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