Proposed Privacy Act changes could disadvantage young patients

Anna Samecki

23/02/2022 3:15:44 PM

Young patients could face barriers when accessing general practice services if a new Government proposal to tighten privacy laws comes into effect.

GP talking to a teenager.
A proposal to make it mandatory to obtain parental consent before using, collecting or disclosing personal information of a child aged under 16 could impact patient care.

Sweeping changes could be made to the Privacy Act 1988 following the Australian Competition and Consumer Commission’s (ACCC) digital platforms inquiry.
The ACCC inquiry raised a number of concerns around how digital platforms collect, use and store consumer data.
In response to the inquiry, the Attorney-General’s Department announced at the end of 2019 that it would conduct a review of the Act to ensure ‘privacy settings empower consumers, protect their data and best serve the Australian economy’.
A discussion paper released by the department in October 2021 details 28 proposals to tighten privacy laws, including a proposal to make it mandatory for individuals or organisations to obtain parental consent before using, collecting or disclosing personal information of a child aged under 16.

While the proposed changes may be justified in other sectors, the Australian Medical Association (AMA) has made it clear it does not support some of the changes being applied to medical practice and research, which it says has appropriate privacy practices under existing legislation.

Doctors have also warned that the proposed changes could disadvantage young patients and have unintended negative consequences.
In one example, the proposed tightening of children’s privacy laws could discourage young people from seeking medical care, including those hoping to discuss contraceptive options or mental health issues in confidence and without their parent’s knowledge.
According to the department, the rationale behind many of the proposals is the concern over targeted marketing by commercial entities that either operate online platforms or applications, or purchase data from entities that do.
But the AMA said in a submission to the department earlier this year that rather than fundamentally changing the entire Privacy Act, these concerns could be better addressed through separate legislation that applies to the prescribed services, organisations or activities of interest.
In the submission, the AMA warned that ‘proposal 13 would remove any ability for persons under 16 to seek confidential advice about their sexual or mental health [including through Headspace and KidsHelpLine]’.
AMA Vice President Dr Chris Moy told newsGP that while the AMA is generally supportive of most of the recommendations, the biggest concern is the blanket proposal around minors and the implications of this for the provision of safe and confidential healthcare.
‘Doctors deal with information confidentially, especially when managing children under 16 who have decision making capacity,’ he said.
‘We often provide care, including consent to treatments such as contraception, if the young person has competence.
‘We don’t want this recommendation turning into legislation that can impair our ability to care for these patients.’
Dr Moy also pointed out that the proposal, if applied to healthcare in its current form, could potentially put minors at risk.
‘We also look after minors who don’t necessarily have a good relationship with their carers. There may be domestic violence or abuse, so those situations need clarification,’ he said.
‘We also need to have the ability to store information, such as clinical notes, and transfer this information to other people involved in the child’s care where needed. We can’t have legislation impeding this.’
In addition to the AMA, a number of other organisations have submitted responses to the Department for consideration, among them the RACGP, RANZCP, Australian Digital Health Agency and Avant.
The RACGP submission made a number of key recommendations, including that:

  • biometric data be specifically addressed as part of any update to privacy legislation
  • a similar approach to the General Data Protection Regulation (European Union) (GDPR) is taken to define personal information in an Australian context
  • personal information about deceased individuals be protected more consistently through national legislation
  • consent to share identified information should be based on an opt-in model
  • organisations should be required to refresh consent on an annual basis
  • patients should be given the opportunity to review audits showing use of and access to their personal information in settings where sensitive information has been collected
  • further consideration be given to the security of information during transfer between organisations with minimum requirements governing data transfer to increase protections.
Avant Senior Legal Advisor, Ruanne Brell, also spoke with newsGP and said many of the proposed changes to the Privacy Act would have an impact on GPs and general practices, if introduced. 
‘One of the proposals put forward for discussion is that “consent to collect the personal information of children by entities must be obtained from the child’s guardian”,’ she said.
‘This could be a barrier to children aged 14–16 years old, and younger, seeking medical treatment without consent from their parents or guardians, where they otherwise have capacity to consent to treatment. 
‘Avant strongly opposes this approach and shares the AMA’s concerns about adopting a one-size-fits-all approach to obtaining consent from children.
‘It should be left to doctors to assess a young person’s capacity to consent, taking into account established “Gillick competence” principles.’
Ms Brell also called for calm, pointing out that these are proposals only and that the process of review is still underway.
‘There is nothing GPs need to do to plan at this stage,’ she said.
‘The Attorney General’s Department is reviewing submissions to the discussion paper and we understand a report is expected later this year.’
The department told media last week it is carefully considering stakeholder feedback to avoid unintended consequences and is in the process of compiling its final report.
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