Reforming the Privacy Act to better support health research

The Attorney General’s Department is undertaking a multi stage review of the Privacy Act 1988. In February 2023 the Department published the Report of the Review of the Privacy Act and of the consultation undertaken in 2021 and 2022. The Report contains many proposals for amendment of the Act, a few of which have direct implications for the use of personal information in research, and consent to the use of information for research purposes. Research Australia responded to these privacy related matters, supporting a broder research consent, and further consultation on the exceptions from consent which permit research to be undertaken.

Research Australia’s submission is available here.

The Government’s response to the report was released on September 2023 and is available here. The Government has accepted the report’s recommendations relating to research and will consult further before developing legislation. Research Australia will continue to participate with further consultations as legislation is developed.

Privacy Act Review- implications for research

The Attorney General’s Department is currently undertaking a review of the Privacy Act 1988. Several of the proposals for change to the Act, including introducing the concept of anonymisation, have implications for research, but the Discussion Paper  does not directly include the way the Privacy Act affects the use of information for research purposes.

Research Australia’s submission highlights these areas and proposes that an expert group  be formed specifically to work on the redevelopment of the NHMRC guidelines in parallel with drafting of proposed amendments to the Act.

Research Australia’s submission is available here.

The Review has been completed and the findings are expected to be released in the first half of 2023.

 

New Poll: Australian’s will share their personal health data if privacy protected

Media Release: Wednesday, 7 September 2016

Some 91 per cent of Australians would be willing to share their de-identified medical data if it went towards research purposes.

That’s just one of the important findings from a Roy Morgan Research poll conducted on behalf of Research Australia as part of their annual national Australia Speaks study.

“What scientists and researchers need is data to develop new treatments and to track changes in the rise and fall of diseases over time,” said Research Australia CEO, Nadia Levin.

Continue reading “New Poll: Australian’s will share their personal health data if privacy protected”