Chapter 1Introduction
1.1The National Occupational Respiratory Disease Registry Bill 2023 (NORDR bill) and the National Occupational Respiratory Disease Registry (Consequential Amendments) Bill 2023 (Consequential Amendments bill) (together, the bills) were introduced in the House of Representatives on 21 June 2023 by the Assistant Minister for Health and Aged Care, the Hon Ged Kearney MP (theAssistant Minister).
1.2On 3 August 2023, the Senate referred the provisions of the bills to the Senate Community Affairs Legislation Committee (the committee) for inquiry and report by 30 August 2023.
Structure of the report
1.3This report contains two chapters. This chapter sets out:
the purpose of the bills;
background information relating to occupational respiratory diseases and current federal and state policy settings;
an overview of the provisions of the bills; and
general information outlining the conduct of the inquiry and other committees’ consideration of the bills.
1.4Chapter 2 outlines submitters’ views on the bills and concludes with the committee’s view and recommendation.
Purpose of the bills
1.5The object of the NORDR bill is to ‘establish a National Occupational Respiratory Disease Registry that will record the incidence of occupational respiratory diseases in Australia and assist in preventing further worker exposure to respiratory disease-causing agents’.
1.6The NORDR bill facilitates the creation of a National Occupational Respiratory Disease Registry (the Registry) which will capture and share data on the incidence of respiratory diseases thought to be occupationally caused or exacerbated. According to the Assistant Minister, the Registry will also capture and share data on:
the incidence of occupational respiratory diseases and their respiratory disease-causing agents;
the last and main exposures including the place of business, industry, occupation and job task; and
respiratory health data.
1.7The Registry will require respiratory and occupational physicians to notify diagnoses of occupationally caused silicosis and will allow for the voluntary notification of other occupational respiratory diseases.
1.8The purpose of the Consequential Amendments bill is to protect against unnecessary intrusions on an individual’s privacy or commercial interests by ensuring that protected information is unconditionally exempt from disclosure in response to a request under the Freedom of Information Act 1982. Personal information for the purposes of the bills includes:
personal information;
workplace identifying information; and
information that is commercial in confidence.
Background
1.9The respiratory disease silicosis is caused by ‘inhalation of respirable crystalline silica generated with manipulating…material containing silica such as engineered stone’.
1.10Silicosis, previously prevalent in the 1940s to 1960s, has been on the rise in Australia over the last decade, driven by the increased popularity of engineered stone material (often used in kitchen and bathroom benchtops) since the early 2000s. Data from Queensland and Victoria suggests that ‘nearly one in four engineered stone workers who have been in the industry since before 2018, are suffering from silicosis or other silica dust related diseases’.
1.11On 26 July 2019, the Commonwealth Government announced the establishment of a National Dust Disease Taskforce (the Taskforce), which took on the role of informing ‘a national approach to the prevention, early identification, control and management of dust diseases in Australia’.
1.12In December 2019, the Taskforce delivered its Interim Advice to the Minister for Health, including a recommendation to establish a National Dust Disease Registry.
1.13The Taskforce delivered its final report in June 2021, recommending a number of measures ‘designed to better protect and support workers, and to recognize the incidence and severity of dust diseases’. One of its primary recommendations included:
6. Building on the early recommendations from the Interim Advice for a strategic national approach to research and the development of a national dust disease registry, and following initial investments, prioritise:
… b. Operationalising the National Occupational Respiratory Disease Registry as soon as possible, with an initial focus on mandatory reporting of silicosis, and voluntary reporting of other occupational respiratory diseases.
1.14Commonwealth, state and territory governments supported this recommendation and the Commonwealth committed funding to the establishment of the Registry, which commenced development in October 2021.
1.15According to the Department of Health and Aged Care (the department), consultation was undertaken with representatives from peak medical professional bodies as well as with state and territory governments to inform the scope, design, content and operation of the Registry.
1.16The department also progressed the development of the legislative and information technology elements of the Registry, along with targeted consultation on an exposure draft of both bills which was undertaken in November 2022. The department advised that, following the consultation, amendments were incorporated to address the issues raised by key stakeholders.
Key provisions of the bills
National Occupational Respiratory Disease Registry Bill 2023
1.17The bill comprises four parts that would establish the National Occupational Respiratory Disease Registry Act 2023. If passed, the bill would commence on a day to be fixed by Proclamation, or the day after a six-month period after RoyalAssent is received.
Establishment, purpose, and contents of the Registry
1.18Clause 11 provides that the Commonwealth must establish and keep a registry called the National Occupational Respiratory Disease Registry and that it may be kept by electronic means.
1.19Clause 13 details the purposes of the Registry and the relevant constitutional basis of the legislation which supports its purpose.
1.20Clause 12 of the bill describes the types of information that may be included in the Registry in relation to individuals who have been diagnosed with, or are being treated for, an occupational respiratory disease. This includes:
minimum notification information;
additional notification information; and
any other information that is relevant to the purposes of the Registry and is determined by the Commonwealth Chief Medical Officer (Commonwealth CMO) under subclause 12(4) for the purpose of subclause 12(3).
1.21Subclause 12(4) provides that Commonwealth CMO may, by legislative instrument, determine the minimum notification information; additional notification information; and any other information relevant to the purposes of the Registry.
Notification requirements and process
1.22Subclause 14(1) provides that a prescribed medical practitioner must notify the Commonwealth CMO if they diagnose an individual with a prescribed occupational respiratory disease at or after the commencement of the proposed Act.
1.23The notification must be in an approved form and be made within the stipulated timeframe, as prescribed by the rule. Further, subclause 14(2) establishes that notification must occur whether or not the individual consents to the notification.
1.24Subclause 14(5) allows prescribed medical practitioners who notify minimum notification information under subclause 14(1) to also notify the Commonwealth CMO of additional information in relation to the individual, provided that individual has provided consent.
1.25Subclause 14(3) establishes that a person is liable to a civil penalty of 30 points (currently $9390) if subclause 14(1) is contravened.
1.26Clause 15 applies to prescribed medical practitioners who are treating an individual with a prescribed occupational respiratory disease, where the practitioner may or may not be the same as that who diagnosed the individual. This clause provides for treating prescribed medical practitioners to notify the Commonwealth CMO of the minimum notification information and additional notification information for individuals who have been diagnosed before the commencement of the Act, where this information is not already in the Registry.
1.27Notifications under clause 15 can only be made where an individual has consented. Additionally, this clause also provides for the correction and updating of information in the Registry.
1.28Clause 16 relates to the notification of non-prescribed occupational respiratory diseases. It makes provision for prescribed medical practitioners who diagnose an individual with a non-prescribed occupational respiratory disease, on or after the commencement of the Act, to notify the Commonwealth CMO where the individual provides their consent.
Use and disclosure of information in the Registry
1.29Part 3 of the NORDR bill sets out the circumstances where collecting, recording, using, or disclosing protected information will be authorised.
1.30Subclause 21(2) provides for the recording, use and disclosure of information in the Registry by:
people engaged by the Commonwealth who do so for purposes of the Registry;
prescribed medical practitioners for the purposes of the individual’s healthcare of the occupational respiratory disease or checking that the relevant information is in the Registry;
people performing their functions/duties or exercising their powers under the proposed NORDR Act;
people who are authorised or required to do so under a Commonwealth, state or territory law;
the Commonwealth CMO, if they believe the information is necessary for enforcement activities;
the person’s whose information it is for the purpose of which it was disclosed to them;
court or tribunal proceedings or in accordance with a court/tribunal order; or
coronial inquiry or at the order of a coroner.
1.31Subclause 21(3) prohibits the disclosure of certain protected information in relation to an individual for the purposes of research, if the information identifies the most recent workplace where the individual believes they were exposed to a respiratory disease-causing agent, or identifies the prescribed medical practitioner who notified the information.
1.32Subclause 22(3) provides for the Commonwealth CMO to disclose an individual’s minimum notification information to a relevant state or territory authority if that person resides in the relevant state or territory, was exposed to the respiratory disease-causing agent in that state or territory, or was diagnosed with an occupational respiratory disease in that state or territory.
1.33Clause 23 stipulates that anyone who uses the protected information without authorisation to do so will have committed an offence, with a maximum penalty of 120 penalty units or two years imprisonment, or both.
1.34Clause 26 sets out the approach to publishing information from the Registry on the diagnosis and progression of occupational respiratory diseases in Australia and requires the Commonwealth CMO to publish annual reports on the number of notifications of occupational respiratory diseases.
Preliminary and other matters
1.35Clause 7 clarifies that the bill does not exclude the concurrent operation of state and territory laws, to the extent these laws can operate concurrently and consistently with the bill. Clause 6 provides that the bill applies to every Australian external territory.
1.36Clause 8 sets out the definitions of key terms used within the bill and clause 9 outlines the meaning of ‘commercial-in-confidence’ and sets out the factors for the Minister to consider when deciding whether information is commercial-in-confidence.
1.37Clause 28 sets out the details for the enforcement of the civil penalties in subclause 14(3) which would apply if a prescribed medical practitioner does not notify the Commonwealth CMO if they diagnose an individual with a prescribed occupational respiratory disease at or after the commencement of the proposed Act in accordance with subclause 14(1).
1.38Clause 30 would allow a registry operator, contracted by the department, to maintain and operate the Registry, as directed by the Commonwealth CMO on behalf of the Commonwealth.
National Occupational Respiratory Disease Registry (Consequential Amendments) Bill 2023
1.39The Consequential Amendments bill adds the National Occupational Respiratory Disease Registry Act 2023 to Schedule 3—Secrecy provisions of the Freedom of Information Act 1982.
1.40This amendment makes information on the Registry which is protected under clause 23 of the proposed Act also exempt from disclosure under a freedom of information request.
Compatibility with human rights
1.41The Statement of Compatibility with Human Rights (the statement) advises that the bills engage the following human rights:
the protection of privacy and reputation;
the right to health; and
the right to a safe workplace.
1.42The statement indicates that the right to health will be advanced by the bills by identifying risks of exposure to respiratory disease-causing agents and by enabling the application of interventions and prevention activities to reduce worker exposure and disease.
1.43The statement also outlines how the bills will advance the right to a safe workplace in similar ways: by identifying risks of exposure to disease-causing agents and intervening to reduce further worker exposure and disease.
1.44The Parliamentary Joint Committee on Human Rights (PJCHR) provided comments on the NORDR bill and raised no concerns with the statement or the bill regarding these two rights.
Privacy
1.45The statement notes that the right to privacy will be limited by the NORDR bill, given the Registry will include protected information and will permit the disclosure of this information under certain circumstances. However, it states that this represents a ‘reasonable and proportionate limitation on an individual’s right to privacy’, going on to say:
This is because the relevant authorisations and exceptions facilitate the handling of protected information for specific limited purposes directed at achieving the purposes of the National Registry, facilitating disclosure to courts, tribunals or coronial inquiries, or where required or authorised by law. The offence for unauthorised handling of protected information provides a safeguard to protect against unlawful interference with privacy.
1.46With respect to these limitations, the PJCHR came to the view that the objective of the Registry with regards to the limitations on the right to privacy ‘is a legitimate objective for the purposes of international human rights law, and the creation of this registry would appear to be rationally connected with that objective’.
1.47However, the PJCHR raised concerns about the extent and proportionality of the limitations on the right to privacy, particularly given the lack of detail in the NORDR bill itself on a number of definitions and procedures, the flexibility of information collection arrangements and the lack of oversight and review mechanisms included in the bill.
1.48In order to satisfy the committee that the bill is compatible with the right to privacy, the PJCHR sought the advice of the Assistant Minister on the following concerns:
why the bill does not define key terms (including listing silicosis as an occupational respiratory disease, and defining categories of medical practitioner and minimum and additional notification information to which the registry would apply);
why information which identifies a person is necessary to be provided to the register in order for it to achieve its stated objective;
why the bill does not establish a mechanism by which the patient (or their relevant physician) may request they not be required to provide all or some information to the registry;
whether individuals would be advised of how their information could be disclosed and used if they elected to provide additional notification information;
why the bill does not provide flexibility to provide only limited information where, for example, a doctor considers it to be in the best interests of the patient;
the process by which information on the registry would be accessed, and whether persons required to provide information to the registry, or those empowered to access the registry, would be able to see the content on the registry generally; and
what oversight and review mechanism of the proposed scheme, and decisions made in relation to it, would apply.
1.49At the time of writing, the Assistant Minister’s response to the PJCHR’s request for further information had not yet been tabled.
1.50The PJCHR made no comment on the Consequential Amendments bill.
Consideration by other committees
1.51The Senate Standing Committee for the Scrutiny of Bills (Scrutiny Committee) made a number of comments on the NORDR bill, raising similar concerns to the PJCHR.
1.52The Scrutiny Committee noted that ‘[t]he bill is characterised by the inclusion of “framework provisions” which contain only the broad principles of a legislative scheme and rely heavily on delegated legislation to determine the scheme's scope and operation’, and that these provisions ‘considerably limit the ability of Parliament to have an appropriate oversight over new legislative schemes’.
1.53In cases such as this, the Scrutiny Committee commended that it ‘expects that the inclusion of broad discretionary powers should be justified in the explanatory materials and that guidance in relation to the exercise of the power should be included within the primary legislation’.
1.54The Scrutiny Committee provided examples of where broad discretionary power had not been justified, including that the Commonwealth CMO has broad discretion to define ‘prescribed occupational respiratory disease’, ‘prescribed medical practitioner’, ‘minimum notification information’ and ‘additional notification information’ by legislative instrument, especially the latter two, as these may have implications for patients’ privacy.
1.55As a result of these concerns, the Scrutiny Committee sought the advice of the Assistant Minister with regards to:
why it is considered necessary and appropriate to leave much of the information relating to the scope and operation of the National Registry to delegated legislation;
whether the bill can be amended to include further detail in relation to the National Registry on the face of the primary legislation; and
what criteria or considerations exist that limit or constrain the exercise of the Commonwealth Chief Medical Officer's broad discretionary powers in determining minimum and additional information.
1.56At the time of writing, the Assistant Minister’s response to the Scrutiny Committee’s request for further information had not yet been tabled.
1.57The Scrutiny Committee made no comment on the Consequential Amendments bill.
Financial impact statement
1.58The financial impact statement included in the Explanatory Memorandum for the bills noted:
The Australian Government established the National Dust Disease Taskforce (the Taskforce) in July 2019 to develop a national approach to the prevention, early identification, control and management of occupational dust diseases in Australia. The operation of the Taskforce was supported by dedicated funding of $5.1 million over two years from 2019–20, which included $1.6 million for the development of the National Registry.
Funding of $2.4 million has been provided to operate the National Registry through to 2025–26.
Conduct of the inquiry
1.59Details of the inquiry were made available on the committee’s website. The committee also contacted a number of organisations and individuals to invite written submissions by 14 August 2023.
1.60The committee received 12 submissions, as listed in Appendix 1.