It is easy to assume that genomic data will be captured by legal definitions of ‘health information’ and ‘genetic information’, but the legal meaning of ‘genetic information’ need not align with scientific categories.

There are many different types of genomic data, with varied characteristics, uses and applications. Clarifying when genomic data is covered by the Privacy Act 1988 (Cth) is an ongoing evaluative exercise but is important for at least 3 reasons:

1. those subject to the Privacy Act need to be able to confidently navigate their responsibilities
2. understanding current controls is a prerequisite for meaningful external critique (and this is particularly important at a time when the Privacy Act is under review), and
3. while legislation that applies to state public sector agencies is generally distinct from the Privacy Act there are similarities that extend the relevance of the question when is genomic data ‘personal information’ under the Privacy Act?

In this presentation, Mark will explore the relationship between the legal concept of genetic information and the concept of genomic data relevant to health and medical research, reflect on the characteristics of each, and the possibility of more clearly identifying the legal rights and responsibilities which attach to the use and disclosure of genomic data in the future.

Speaker: Mark Taylor, Professor in Health Law and Regulation, Melbourne Law School; Director, Health, Law and Emerging Technologies (HeLEX), University of Melbourne.

How to join:

This webinar is free to join but you must register for a place in advance.