Introduction

Purpose of the Bills

1.1        The National Cancer Screening Register Bill 2016 and the National Cancer Screening Register (Consequential and Transitional Provisions) Bill 2016 (collectively, the Bills), establish the National Cancer Screening Register (the Register). Establishment of the Register will support measures introduced in the 2015‑16 Budget to improve the detection, treatment and prevention of cancers. These measures include funding for a renewed National Cervical Screening Program (NCSP) and expansion of the National Bowel Cancer Screening Program (NBCSP; collectively, the programs). Based on evidence from clinical trials, these screening programs are expected to prevent approximately 140 additional cervical cancers and 300-500 deaths from bowel cancer per year.[1]

1.2        The Register provides an electronic infrastructure to support the programs, including the framework for collecting, storing, analysing and reporting the data necessary to the programs. It will also facilitate invitations to participate in the screening process, the distribution of test kits and improve the integration of data between general practices, specialists and pathology laboratories.[2]

1.3        The Bills establish the Register and the authorised collection, use and disclosure of the data it contains. The Explanatory Memorandum (EM) also notes that the Register could be expanded in the future to provide the basis for a national system that includes data on all forms of cancer.[3]

Key provisions of the Bills

National Cancer Screening Register Bill 2016

1.4        The National Cancer Screening Register Bill 2016 consists of four parts, as follows.

Part 1 – Preliminary

1.5        Part 1 consists of seven clauses, including the definitions used within the Bill. Notable definitions include:

• designated cancer means, for the purposes of this Bill, bowel cancer or cervical cancer;
• key information means an individual's name, address, contact details, date of birth, gender and other identifying information as listed in relation to this definition, information in the Register relating to screening associated with cervical cancer such as the individual's sex and human papillomavirus (HPV) vaccination status, and any other information prescribed by the rules for the purposes of this definition; and
• participating State or Territory means a state or territory that has agreed with the Commonwealth to participate in the Register. This definition is used to ensure that the Register does not operate in the states and territories that have not agreed to transition from their current state and territory based cervical screening registers to the Register. In those states and territories that do not agree to transition, their existing cervical screening registers will continue operation.[4]

Part 2 – Register

1.6        Part 2 establishes the Register, including its scope, contents and purposes. Its scope is information about individuals in connection with screening associated with bowel cancer and cervical cancer.

1.7        Clause 11 specifies the types of information that can be contained within the Register:

• the individual's key information;
• the individual's nominated healthcare provider for screening associated with designated cancer;
• information about screening tests undergone or to be undergone by the individual;
• the individual's diagnosis with a designated cancer or pre-cursor to a designated cancer;
• claims information that may indicate screening or diagnostic tests already undergone or that should be undergone by the individual;
• requests to withdraw from participation in the Register; and
• any other information relevant to the purposes of the register and prescribed by the rules.[5]

1.8        The purposes of the Register, as established in clause 12, include:

•  establishing and keeping an electronic database of records relating to screening and diagnoses associated with the designated cancers;
• collecting, analysing and publishing statistics and other information relating to screening and diagnoses associated with the designated cancers;
• monitoring the effectiveness, quality and safety of screening and diagnoses associated with the designated cancers; and
• advising individuals, their healthcare providers and the relevant State or Territory when action may need to be taken following a screening test.[6]

Part 3 – Dealing with information in the register

1.9        Part 3 establishes the guidelines for the use of information in the Register, including defining personal information as 'protected information'.

1.10      Section 18 makes it an offence for a person to record, disclose or use protected information without authorisation, and sections 19 – 22 list the exceptions to this. The exceptions are:

• if the use was in good faith and in purported compliance with the authorised uses of the information (as outlined in section 17);
• if the information is commercial-in-confidence and the person does not know that the information is commercial-in-confidence; or
• if the person making or receiving the disclosure of information is the person to whom the information relates, or who provided the information.[7]

National Cancer Screening Register (Consequential and Transitional Provisions) Bill 2016

1.11      This Bill consists of two parts: the first to amend other Acts, the second to create the application and transitional provisions.

1.12      The Bill amends three existing Acts: the Australian Immunisation Register Act 2015, the Freedom of Information Act 1982 and the Health Insurance Act 1973.

1.13      The Bill also authorises the transfer of information from existing State and Territory databases to the Commonwealth.[8]

Consideration of the Bills by other committees

Scrutiny of Bills

1.14      The Senate Standing Committee for the Scrutiny of Bills (the Scrutiny of Bills Committee) examined the National Cancer Screening Register Bill 2016 in its Alert Digest No. 6 of 2016 and noted that, while the Bill contains an option for individuals to remove themselves from the Register, consideration could have been given to making the Register an opt-in initiative. The Scrutiny of Bills Committee also noted that the existing opt-off provision does not allow individuals the option of removing all their existing information from the Register – only future information is affected.[9]

1.15      The Scrutiny of Bills Committee further commented on the Bill's subclause 11(g), which provides for the Register to include 'further information relevant to the purposes of the register and prescribed by the rules'. Noting the EM's rationale that changes in technology may require different or additional information to be included in the future, the committee suggested that requiring the Minister to consult the Privacy Commissioner before making rules under this subclause may alleviate concerns about inappropriate delegation of legislative power.[10]

1.16      Additionally, the Scrutiny of Bills Committee noted that there is no stated rationale for the Bill's provision (in subparagraph 17 (3)(a)(iv)) allowing a person who is a 'prescribed body' to collect, make a record of, disclose or otherwise use protected information in the Register. It questioned how adequate control could be maintained over those prescribed bodies.[11]

1.17      At the time of tabling, the Minister for Health had not yet responded to the issues raised by the Scrutiny of Bills Committee. The committee urges the Minister for Health to respond urgently to the issues raised by the Scrutiny of Bills Committee.

Human rights

1.18      The Parliamentary Joint Committee on Human Rights had not considered these Bills at the time of tabling. The committee notes that the statement of compatibility with human rights included in the Explanatory Memorandum for the National Cancer Screening Register Bill 2016 recognises the Bill's engagement with human rights, particularly the right to health, by supporting early detection and prevention of cancer through screening,[12] and the right to privacy and reputation. The statement of compatibility states that the:

... authorisations for the use and disclosure of personal information are reasonable, appropriate and necessary for the objectives and purposes of the Bill and adequately describe persons who require access to the Register to achieve the objectives of the Register.[13]

1.19      Individuals are able to both access their own data and request that the Register not collect, store, use or disclose any protected information about them.[14]

1.20      The statements of compatibility for both Bills conclude that the Bills are compatible with human rights.[15]

Conduct of the inquiry

1.21      The provisions of the Bills were referred to the Community Affairs Legislation Committee on Tuesday 13 September 2016 for inquiry and report by 11 October 2016.[16]

1.22      The committee advertised the inquiry on its website and wrote to relevant individuals and organisations inviting submissions by 22 September 2016. The committee received 26 submissions, which are listed at Appendix 1.

1.23      The committee held a public hearing in Sydney on Thursday 29 September 2016. Witnesses who appeared at that hearing are listed at Appendix 2.

1.24      The committee thanks those submitters and witnesses who contributed to the inquiry.

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