Bills Digest no. 14,
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WARNING: This Digest was prepared for debate. It reflects the legislation as introduced and does not canvass subsequent amendments. This Digest does not have any official legal status. Other sources should be consulted to determine the subsequent official status of the Bill.
Amanda Biggs and Alex Grove
Social Policy Section
Mary Anne Neilsen
Law and Bills Digest Section
Purpose of the Bills
Structure of the Bills
Basis of policy
Burden of cancer
Role of registers in screening
National Cervical Screening Program
Participation in the NCSP
Current Cervical Cancer Register
National Bowel Cancer Screening
Current register arrangements
Senate Standing Committee for
Selection of Bills
Senate Standing Committee for the
Scrutiny of Bills
Policy position of non-government
Position of major interest groups
Statement of Compatibility with Human
Parliamentary Joint Committee on
Key issues and provisions
Consequential and Transitional
Date introduced: 31
House: House of
clauses in the National Cancer Screening Register Bill 2016 (the NCSR Bill),
except for clause 13, commence on the day after Royal Assent; clause 13 commences
on 1 May 2017. The substantive provisions of the National Cancer Screening
Register (Consequential and Transitional Provisions) Bill 2016 commence at
the same time as the NCSR Bill.
Links: The links to the
Bills, their Explanatory Memoranda and second reading speeches can be found
on the home pages for the National
Cancer Screening Register Bill 2016 and the National
Cancer Screening Register (Consequential and Transitional Provisions) Bill
2016 or through the Australian
When Bills have been passed and have received Royal Assent,
they become Acts, which can be found at the Federal Register of Legislation
All hyperlinks in this Bills Digest are correct as
at September 2016.
The purpose of the National Cancer Screening Register Bill
2016 (NCSR Bill) is to establish and provide the legal framework for the
operation of a national cancer screening register of information associated
with bowel cancer and cervical cancer.
The purpose of the National Cancer Screening Register
(Consequential and Transitional Provisions) Bill 2016 (Consequential Bill) is to
deal with consequential and transitional matters.
Both Bills were first introduced during the 44th
Parliament on 5 May 2016, but lapsed on dissolution of the Parliament.
of the Bills
This NCSR Bill is divided into four parts:
1 deals with preliminary matters including relevant definitions
2 establishes the new National Cancer Screening Register (the Register) and
amongst other things sets out the content and purpose of the Register
3 deals with the use and disclosure of information in the Register
4 deals with other matters including civil penalties, approved forms,
agreements and delegations.
The Consequential Bill has one schedule with two parts. Part
1 amends three related Acts; Part 2 proposes application and transitional
provisions relating to the establishment of the Register.
The Register will support the operation and planned
expansion of two cancer screening programs: the National Cervical Screening
Program (NCSP) and the National Bowel Cancer Screening Program (NBCSP). Screening
involves testing people with no obvious signs of disease. The aim of screening
is to detect cancer early so that treatment can commence before the disease
progresses to a more serious and more difficult to treat stage.
Broadly, the Bills establish the Register and authorise it
to collect, use, transfer and disclose information relevant to the two
programs. Both programs are being expanded in line with recent clinical advice.
The government anticipates that the expansion of the NCSP will prevent an
additional 140 cervical cancers each year, while the expansion of the NBSCP may
prevent 300–500 deaths per year.
In future the Register could be expanded to support other cancer screening
The decision to establish the Register was announced in the
A further commitment was made in the 2016–17 budget, which allocated $178.3
million to develop the Register.
An open tender process was conducted which resulted in Telstra Health being
awarded the contract to operate the new Register.
The announcement of the contract occurred during the Caretaker period.
Bowel cancer (also known as colorectal cancer) is very
common in Australia. It was the third most commonly diagnosed cancer in
Australia in 2012 (14,958 new cases), and is expected to be the second most
commonly diagnosed cancer in 2016 (17,520 new cases expected). Bowel cancer is
more common in men than women, and the incidence generally increases with age.
Bowel cancer was the second most common cause of death from cancer in 2013
(4,162 deaths), and is expected to be the second most common again in 2016
(4,094 deaths expected).
Cervical cancer is much less common than bowel cancer in
Australia. Cervical cancer was the 15th most commonly diagnosed cancer in
Australian females in 2012 (869 new cases), and is expected to be 15th again in
2016 (903 new cases expected). There were 224 deaths from cervical cancer in
2013, and it is estimated that this will increase to 250 deaths in 2016.
registers in screening
The use of registers in organised national cancer screening
programs is a feature in many countries. A review of organised screening
programs since 1970 found European guidelines on screening frequently featured
registers as a key component of their programs.
Whether a screening program is categorised as organised:
... tends to come down to one key factor: whether or not all
eligible women are personally invited to attend screening. This aspect of
organisation relies on the existence and availability of a population register
to a screening programme.
Other evidence supports the importance of registers in supporting
national screening activities. A recent study into the effectiveness of two
Danish registers for breast and cervical cancers found the Danish registers
proved to be valuable in evaluating the effectiveness of their ongoing cancer screening
The review of organised screening programs noted that privacy
issues can determine the feasibility of population-based registers in some
Cervical Screening Program
(NCSP) was established following the recommendation of the Cervical Cancer
Screening Evaluation Steering Committee, set up by Australian Health Ministers
in 1988, to examine the benefits of cervical screening. In 1991, the Organised
Approach to Preventing Cancer of the Cervix was established as a joint
initiative of the Australian and state and territory governments. In 1995, it
was renamed the National Cervical Screening Program.
The NCSP promotes routine screening with Pap smears every
two years for women between the ages of 18 and 69 years.
It aims to reduce cervical cancer prevalence and mortality, by detecting and
treating cervical abnormalities before they progress to cancer. The Pap smear
is usually conducted in a primary care setting, usually by a GP or practice
nurse or at community or women’s health centres, family planning clinics or
sexual health clinics. Incentive payments are available to encourage GPs to
screen under-screened women, that is, women in the target group who have not
had a cervical smear in the last four years.
Since commencing in 1991, the incidence and mortality of
cervical cancer has halved, although for Indigenous women incidence and
mortality remain higher.
Screening involves the following steps:
- encouraging all eligible women to enter and remain in the screening
- ensuring optimal quality of Pap smears by adequate training of
Pap smear takers
- ensuring optimal quality of Pap smear reading through a quality
assurance program for laboratories
- ensuring appropriate follow-up of abnormal Pap smears through
- providing an efficient system for notifying results to women by
Pap smear providers
- providing recall and reminder systems to ensure adequate
follow-up of women with screen-detected abnormalities
- maintaining women’s participation in the program by encouraging
providers to set-up reminder systems, and developing cervical screening
- reporting on national performance measures and contributing to
national cancer data.
The cost of the Pap smear involves paying the consultation
and the pathology fee, both of which are Medicare rebateable. If the practice
and pathology provider bulk bills there is no cost to the patient.
The NCSP is jointly funded by the Commonwealth and the
states and territories, however, most funding is provided by the Commonwealth
in the form of Medicare benefits.
As well as the NCSP, the Australian Government funds the
National Human Papillomavirus (HPV) Vaccination program for girls and boys.
From May 2017, the two yearly Pap smear will be replaced
with the HPV test. This test detects the presence of HPV infection, the
precursor to cancer of the cervix. The HPV test will only be required for women
aged 25 to 74 years once every five years. This decision follows a
recommendation from the independent expert clinical body, the Medical Services
Advisory Committee (MSAC).
in the NCSP
The Australian Institute of Health and Welfare (AIHW)
collects and publishes data on the NCSP. Its most recent report covers the
period 2013 and 2014.
The report found:
- in 2013 and 2014, more than 3.8 million women participated in the
NCSP. This was 57 per cent of women in the target population (aged 20–69)
- the age-standardised participation rate of 58 per cent has not
changed since 2011–12
- participation differed across remoteness areas, with the highest
participation of 59 per cent in inner regional areas, and the lowest of 52 per
cent in very remote areas and
- participation rose with increasing socioeconomic status, from 52
per cent for women in the lowest socioeconomic group to 64 per cent for women
in the highest socioeconomic group.
Data on screening for Indigenous women is not available, as
Indigenous status is not recorded on pathology request forms in some
jurisdictions, although evidence suggests that Indigenous women are
Cervical Cancer Register arrangements
Cervical screening registers currently operate in each state
These registers are operated primarily by state health departments, with the
exceptions of Victoria, South Australia (SA) and New South Wales (NSW).
In Victoria the Victorian Cervical Cytology Register is
operated by the Victorian Cytology Service (VCS), which is described on its
website as a health promotion charity. The VCS also operates the SA Cervix
Screening Registry on behalf of the SA Health Department.
In NSW the Pap Test Register is operated by the Cancer
Institute NSW, a company limited by guarantee and created by the Cancer
Institute (NSW) Act 2003 (NSW). In 2013, the Cancer Institute NSW became a
pillar (support organisation) of the NSW health system. This now sees the
Institute governed under the Health Services Act 1997 (NSW) and the NSW
Public Sector governance and accountability framework.
In order for the Register to operate nationally, states and
territories will need to agree to transition the information contained in their
current registers to the national Register. Those that do not agree to this
will continue operating their own registers.
The Register was discussed at a Health Minister’s meeting, but the views of the
states and territories remain unknown at the time of writing.
Bowel Cancer Screening Program
Bowel Cancer Screening Program
(NBCSP) was initiated by the Australian Government in 2006 in partnership with
state and territory governments to detect bowel cancer early in order to reduce
the number of Australians who die each year from the disease.
Participants are sent a free, home-based screening kit in
the post around the time of their birthday. Once bowel samples are collected,
patients send these to a pathology laboratory in the reply paid envelope
provided in the kit. Participation is voluntary and there is no cost involved
in completing the test. Test results are then sent back to the participant and
a copy is also sent to the participant’s nominated doctor. Participants with a
positive result are advised to see their doctor to discuss the result and for
referral to further diagnostic testing, usually a colonoscopy. These follow-up
health services are usually provided through state and territory government
health services or private health services.
The NBCSP is currently inviting those turning 50, 55, 60,
64, 65, 70, 72 and 74 to take part.
In the 2014 Budget, the Australian Government announced an
expansion of the NBCSP which involved the introduction of two-yearly screening
for all Australians aged 50 to 74 by 2020.
This expansion is being implemented in stages. This was based on clinical trial
evidence which indicated that two yearly screening could prevent between 300
and 500 deaths per year.
Between 2015 and 2020, the following age groups will be
added to the screening program:
58 and 54 year olds
and 66 year olds.
Those aged 52 and 56 will be included from 2019 to 2020.
From 2015, people turning 70 or 74 will also be invited to
screen. Other age groups will then be added progressively to achieve the target
that by 2020 all Australians aged 50 to 74 will be invited to screen every two
Participation rates in the NBCSP are lower than in the NCSP.
The AIHW collects and publishes data on the NBCSP. Its most recent report
covers the period from 2013 to 2014. The report found:
the 2.24 million eligible people invited to screen in 2013 and 2014, around 836,000
participated in the NBCSP, for a participation rate of 37 per cent
(35 per cent) had a lower participation rate than females (40 per cent)
rates increased with age, from 29 per cent in the 50 to 54 age group to 44 per
cent in the 65 to 69 age group and
participation rate has fallen from 44 per cent in 2007–2008 to 37 per cent in
Currently, the Department of Human Services manages the NBCSP
Register nationally on behalf of the Department of Health. The Register
contains details such as the participant’s name, contact details, age, gender,
Medicare number, results of screening tests and the name of the participant’s
nominated doctor. The results of any further tests such as a colonoscopy or
biopsy, are also recorded.
According to the Health Minister the current Register is
‘outdated and fragmented’.
Standing Committee for Selection of Bills
At the time of writing, the Senate Standing Committee for
Selection of Bills had deferred consideration of the NCSR Bill and the
However, on 13 September 2016, the Senate referred the
National Cancer Screening Register Bill 2016 and the National Cancer Screening Register
(Consequential and Transitional Provisions) Bill 2016 to the Senate Community
Affairs Legislation Committee for inquiry and report by 11 October 2016.
Standing Committee for the Scrutiny of Bills
At the time of writing, the Senate Standing Committee for
the Scrutiny of Bills had not considered the NCSR Bill or the Consequential
position of non-government parties/independents
Specific commentary on the provisions in this Bill from
non-government parties has yet to be identified.
The Labor Party indicated that it was broadly supportive
of the changes to cancer screening arrangements that were announced in the
2015–16 Budget, which relate to measures in this Bill. At the time Labor’s comments
were largely about the changes to cervical cancer screening arrangements.
However, it has previously indicated general support for cancer screening,
More recently Labor has raised concerns around the
awarding of the contract for the Register to Telstra Health. Shadow Health
Minister, Catherine King described it as ‘an extraordinary step in the
privatisation of Medicare’ and warned it could ‘jeopardise the patient data of
In an interview with ABC radio, Ms King described the decision as a ‘disaster
when it comes to health’, which would result in the Government having to ‘pay
Telstra extra’ to access important health data.
During the election campaign Labor stated it ‘support[ed]
the establishment of a national cancer registry’ but that the awarding of the
contract to Telstra Health was ‘the wrong decision’. Nevertheless, Labor
indicated it would honour the contract if elected.
Comments from other parties and independents about the
establishment of the cancer Register have not been identified.
major interest groups
The establishment of the Register has been broadly
welcomed. Pathology Australia, representing the pathology sector described it
as ‘an important cancer prevention measure’. Centralisation will ‘increase
efficiency as well as helping to better coordinate treatment’, according to the
The establishment of the Register was also welcomed by the Consumers Health
Forum (CHF) which said it ‘will mean a much bigger database to more effectively
track these two lethal diseases’.
The Register was also welcomed by Australian Medical Association (AMA)
vice-president Dr Stephen Parnis, who reportedly said, ‘We know that cancer
registries are essential for the early detection and treatment of cancers and
we need to have that available in a form that is useable, that is secure and
that promotes patient privacy’.
However, the awarding of the tender to Telstra Health in
May raised some concerns around privacy and security.
Technology expert Anthony Harrowell points out that the contract awarded to
Telstra Health—reportedly worth $220 million—had two objectives. One was to
... a contact database linked to electronic or paper-based
reminders not containing sensitive information; and the other being a full
personal “cancer” health record containing test results, treatments and other
highly sensitive information.
While conceding a telecommunications company would be
equipped to deal with simple reminders to undertake cancer screening, he points
out that this is very different to handling sensitive personal medical data,
particularly when the company involved has experienced ‘serious data breaches’.
The Australian Healthcare and Hospital Association (AHHA) while
welcoming the Register, has also expressed concern over governance issues,
particularly data ownership, control, access to data and responsibility for
compilation and release of reports.
Privacy issues have sometimes featured in past debates
about the use of personal health data such as during the development of the
electronic health record (now called the My Health Record).
However, a recent opinion poll indicates that public support for the sharing of
personal health data for the purposes of research is relatively strong.
According to the Roy Morgan poll undertaken for Research Australia, some 91 per
cent of those surveyed supported the sharing of their de-identified medical
data if it was used for research. Some 60 per cent supported health officials
using their data to track diseases.
Whether concerns over privacy in relation to the Register will escalate may
depend on how well the public is informed about the Register’s role in research
and in helping to prevent disease.
Managing director of Telstra Health Shane Solomon
explained to the ABC how the organisation would use four recently acquired
health businesses to build and administer the Register, and that their intent
is to use ‘modern digital technologies of SMS, email, internet portals to make sure
that we don't lose track of people at a time when they need to be screened’.
According to media reports, the current operator of the
Victorian and South Australian registers, the not-for-profit Victorian Cytology
Service (CVS) which reportedly tendered for the contract has been approached by
Telstra Health for access to its expertise and staff.
The cooperation of state and territory governments will be
needed to ensure screening information contained in their registers is
transferred to the new Register. Some discussion with the states and
territories over the Register has been done through the Council of Australian
Governments (COAG) Health Council. The Commonwealth’s new investments in the
national Cancer Screening Register were discussed at the Health Minister’s
meeting in August 2015.
However, no further commentary from state governments has been identified.
The Explanatory Memorandum states that the Government is
providing $178.3 million in funding for the establishment of the Register. On
top of the $148.4 million already committed the Government provided an
additional $29.9 million in the 2016–17 Budget.
Costs associated with setting up the Register will be
partially offset by future savings from the discontinuation of the NBSCP
Register which is currently operated by Human Services.
It is not clear if this funding includes the value of the
contract awarded to Telstra Health, which media reports suggests is in the
vicinity of $220 million.
Statement of Compatibility with Human Rights
As required under Part 3 of the Human Rights
(Parliamentary Scrutiny) Act 2011 (Cth), the Government has assessed the
Bills’ compatibility with the human rights and freedoms recognised or declared
in the international instruments listed in section 3 of that Act. The
Government considers that the Bills are compatible.
Joint Committee on Human Rights
At the time of writing, the Parliamentary Joint Committee on
Human Rights had not considered the NCSR Bill or the Consequential Bill.
Part 1 of the NCSR Bill contains preliminary
provisions, including commencement information, a simplified outline of the
Bill, definitions of key terms and meanings. It also has provisions stating
that the Bill binds the Crown and that it applies to all external territories.
Important definitions central to the Bill include the
definition of ‘key information’ and ‘protected information’. ‘Key information’
covers a broad range of personal information including an individual’s name,
address, contact details, date of birth, gender, health care identifier and Medicare
number. In relation to the information associated with cervical cancer screening,
key information also includes information about an individual’s sex and an
individual’s HP vaccination status. The definition of ‘key information’ is
defined very broadly to also include any other information of a kind relevant
to the purposes of the Register and prescribed by the rules for the purposes of
this definition. ‘Protected information’ is defined as personal information or
information that is commercial-in-confidence that is included in the Register
or obtained under or in accordance with this Act. It includes information
derived from a record of information in the Register or otherwise obtained
under the Act. The definition of ‘personal information’ relies on the equivalent
definition in the Privacy Act 1988.
Part 2 of the NCSR Bill (clauses 8-15)
establishes the Register and its legal framework.
Subclause 9(1) requires the Commonwealth to establish
and keep the Register. Ownership is not specified, but the Explanatory
Memorandum notes that the Commonwealth will be the custodian of data in the
Subclause 9(2) allows for parts of the Register to be kept separately.
This will allow information from the NCSP to be kept separate from information
from the NBCSP, so as to prevent unnecessary disclosure.
Clause 11 sets out the types of information that
may be collected for inclusion in the Register. Amongst other things, the
Register may include an individual’s ‘key information’ (defined in clause 4);
details of an individual’s healthcare provider; information about screening
tests undergone; disease diagnosis; claims information including from Medicare;
details of requests about, or withdrawals from, participation in the Register;
and any other information prescribed by the rules. The Explanatory Memorandum provides
more detailed explanation of clause 11.
Clause 12 sets out the purposes of the Register, which
electronic records relating to screening and diagnoses of the two designated
analysing and publishing statistics
the effectiveness, quality and safety of screening
individuals with invitations to undergo screening
individuals with a test kit for screening
individuals when they are due to undergo screening or of any action needed to
be taken after screening
participating state and territories of any required action for an individual
residing in their jurisdiction
an individual with access to information about their screening and diagnoses
a healthcare provider with access to information about an individual’s
screening and diagnoses so the individual can be provided with healthcare
participating states and territories with access to information about screening
and diagnoses in their jurisdictions
delivering and promoting health services in relation to the designated cancers
to international bodies in relation to the designated cancers
relating to health care, screening or a designated cancer and
incidental to the above.
Proposed subclause 12(2) provides that references
to an individual in this section also cover references to an individual’s personal
The Explanatory Memorandum explains the purposes of the
Register in more detail.
Subclause 13(1) places an obligation on prescribed health
care providers to notify the Chief Medical Officer of information prescribed by
the rules in relation to screening tests and diagnoses in an approved form,
within a prescribed timeframe. Failure to comply with this obligation results
in a civil penalty of 30 penalty units
(subclause 13(2)). However this penalty will only apply from 1 May 2018 (item
6 in the Consequential Bill).
Clause 14 allows an individual (or their personal
representative) in the approved form to alter their participation in the
Register. For example an individual may request to opt out of the Register,
limit their participation, choose not to have their information recorded, or
use a pseudonym. The Explanatory Memorandum indicates this can be done by
individuals using the self-service facility on the Register.
The Commonwealth must act on such requests ‘as soon as practicable’ (subclause
14(3)). The Explanatory Memorandum notes that these provisions are designed
to protect individual privacy. However, in order ‘to ensure Register data is
not compromised’ the provision operates prospectively and will not apply to
information already collected.
Clause 15 of the NCSR Bill provides a number of
‘alternative’ constitutional bases for the validity of the Bill. Legislation must be supported by a Constitutional
head of power. The High Court has also established that Commonwealth spending
must be supported by a valid head of power. 
Like most legislation, the Bill can possibly be founded on more than one head
of power. This provision has the effect that if the High Court were to find
that some of the provisions were not properly founded on a particular power,
then the Act would still stand to the extent that another head or heads of
power provides a valid Constitutional basis.
Part 3 of the NCSR Bill (clauses 16-22)
deals with the use and disclosure of information in the Register. Clause 17
deals with collection, use and disclosure of information for the Register. Subclause
17(1) provides that a person may collect, make a record of, disclose or
otherwise use information if it is for the purposes of uploading the
information in the Register—information here refers to personal information,
key information or information that is commercial-in-confidence (all defined in
clause 4). The specific circumstances where collecting, recording, using
or disclosing protected information or key information from the Register is
authorised are provided in subclause 17(3) of the Bill. Amongst other
things the authorised categories include:
officer or employee of the Commonwealth, a person engaged by the Commonwealth
to perform work related to the purposes of the Register or prescribed body
where the collection, recording, disclosure or use is for the purposes of the
healthcare provider where the information is about screening or diagnosis
associated with the two designated cancers
participating state or territory authority where the collection, recording,
disclosure or use is required or permitted by the law of the state or territory
the person does so for the purposes of performing the person’s functions, or
exercising the person’s powers under this Bill
the collection, recording, disclosure or use is required or authorised by or
under a law of the Commonwealth or of a state or territory
the information is disclosed to the person under this section and the
collection, recording, disclosure or use is for the purposes for which the
information was disclosed to the person
Secretary where the collection, recording, disclosure or use is for the purpose
of disclosing information to a professional disciplinary body or child
protection officer and the Secretary reasonably believes that the information
will enable or assist them to perform or exercise any of their functions or
the person does so for the purposes of court or tribunal proceedings, or a
Clause 18 creates an offence arising from the unauthorised
disclosure or use of protected information contained in the Register. Persons
who record, use or disclose protected information and are not authorised to do
so under clause 17 of the Bill are subject to a maximum penalty of imprisonment
for two years or 120 penalty units, or both.
A question that might be asked is why this offence provision only applies to
the misuse of protected information and not to the misuse of key information.
The Explanatory Memorandum does not explain the rationale for this distinction.
Clauses 19 to 22 specify exceptions in relation to
clause 18. If the person discloses or uses protected information in good faith,
or is unaware it is commercial-in-confidence, or discloses the information to
the person to whom the information relates or discloses information to a person
who has already provided the information, they are exempt from the offence
provision at clause 18. In each case the defendant would bear an evidential
burden of proving the exemption.
Part 4 (clauses 23 to 28) deals with
Clause 24 specifies that the civil penalty
provisions are enforceable under Part 4 of the Regulatory Powers
(Standard Provisions) Act 2014.
Clause 26 authorises the Minister on behalf of the
Commonwealth to enter into a written agreement to perform services in relation
to the Register. This clause is important as it allows the Commonwealth to
contract out the operation of the Register. As noted earlier, the tender to
operate the Register has been awarded to Telstra Health.
Clause 28 provides that the Minister may by
legislative instrument make rules to prescribe matters required or permitted to
be prescribed under the Bill and more generally to make rules necessary or
convenient to be prescribed for carrying out or giving effect to the Bill (when
enacted). Subclause 28(2) sets out
the limits on the scope of the rule making power—for example, rules may not
create an offence or civil penalty or directly amend the text of the Bill (when
and Transitional provisions
The National Cancer Screening Register (Consequential and
Transitional Provisions) Bill 2016 (the Consequential Bill) deals with
consequential amendments and transitional matters related to the enactment of
the NCSR Bill. Part 1 to Schedule 1 of the Bill makes amendments to three Acts.
Part 2 deals with the application of provisions and transitional arrangements.
Item 1 inserts new paragraph 22(2)(ca) into
Immunisation Register Act 2015.
Section 22 of this Act sets out the authorised dealings with protected
information in the Australian Immunisation Register. Item 1 amends
section 22 so that protected information from the Australian Immunisation
Register such as an individual’s HPV Vaccination status is allowed to be
disclosed to the Register.
Item 2 amends Schedule 3 of the Freedom of
Information Act 1982
(FOI Act). Schedule 3 of the FOI Act provides a list of
secrecy provisions in various Acts that are exempt from FOI requests under
section 38 of the FOI Act. Item 2 adds to this list the offence
provision specified at section 18 of the NCSR Bill.
The Explanatory Memorandum explains that item 2 has the effect of
ensuring that protected information in the Register is exempt from FOI requests
if disclosure of that information would be an offence under clause 18 of the
Item 3 amends section 130 in the Health Insurance
Section 130 is a secrecy provision and prohibits the disclosure of health
insurance information subject to certain exceptions. Item 3 inserts new
subsection 130(5H), to add an additional exception allowing the
provision of Medicare information for inclusion in the Register kept under the NCSR
Act. The Explanatory Memorandum states that this will enable the initial
data migration and ongoing provision of Medicare enrolment and claim data to
Item 4 specifies definitions which are explained in
the Explanatory Memorandum.
Item 5 authorises the transfer of information from
state and territory cervical screening registers to the Register. Information
on cervical screening is currently held in registers operated by the states and
territories. Subitem 5(3) provides that the Minister may make rules
by legislative instrument that prescribe state and territory registers or
databases that contain information relevant to cervical cancer screening. This
provision applies regardless of any laws that would otherwise prohibit the
transfer of such information (subitem 5(4)).
Item 6 specifies that the penalty provisions
applying to a health care provider at subsection 13(2) of the National Cancer Screening Register Act 2016, for
failing to notify the Chief Medical Officer of prescribed information, do not
apply before 1 May 2018. As the Explanatory Memorandum explains, this will give
health care providers time to transition to the notification requirements.
Together, these two Bills establish the National Cancer
Screening Register and the legislative framework for its operation. The
Register will underpin national screening programs for cervical cancer and
bowel cancer, diseases which impose a considerable burden on individuals,
families and the community more generally. While the proposal for a national
Register is broadly supported, some disquiet exists around privacy and the
awarding of the contract to operate the new Register to the private company
Members, Senators and Parliamentary staff can obtain
further information from the Parliamentary Library on (02) 6277 2500.
of Australia, ‘National
Cancer Screening Register Bill 2016 homepage’, Australian Parliament
website; and Parliament of Australia, National
Cancer Screening Register (Consequential and Transitional Provisions) Bill 2016
homepage, Australian Parliament website.
Memorandum, National Cancer Screening Register Bill 2016, p.1.
measures: budget paper no. 2: 2015–16, p. 105.
measures: budget paper no. 2: 2016–17, p. 110.
of Health (DoH), National
Cancer Screening Register, media release, 26 May 2016; M Kenny, ‘Telstra
wins deal to manage cancer records’, Sydney Morning Herald, 26 May
2016, p. 9.
National Cancer Screening Register, op. cit.
Institute of Health and Welfare (AIHW), ‘Bowel cancer
(colorectal cancer)’, AIHW webpage.
‘Cervical cancer’, AIHW
H Williams, S M Carter and L Rychetnik, ‘Organised
cervical screening 45 years on: How consistent are organised screening
practices?’, European Journal of Cancer, 50 (17), November 2014, pp.
3029–3038, see Box 1.
von Euler-Chelpin, E Lynge and M Rebolj, ‘Register-based
studies of cancer screening effects’, Scandinavian Journal of Public
Health, 39 (Suppl 7), 2011, pp. 158–164.
Carter, Rychetnik, ‘Organised cervical screening 45 years on’, op. cit., p.
Cervical Screening Program: About the Program’, DoH webpage, last updated 5
test involves a health practitioner taking a cell sample from the cervix, which
is then sent to a laboratory and tested for abnormalities.
of Human Services (DHS), ‘Practice
Incentives Program: cervical screening incentive’, DHS webpage, last
updated 7 September 2016.
Cervical screening in Australia 2013–2014,
Cancer series, 97, AIHW, Canberra, 3 May 2016, p. vii.
Cervical Screening Program: About the Program’, DoH webpage, last updated 5
HPV virus is a contagious virus that can lead to cell changes which can then
progress to cancer. The HPV vaccine is provided free in schools to all males
and females aged 12-13 years under the National HPV Vaccination Program. See
Australia Program: Human Papillomavirus’, DoH webpage, last updated 31 May
Services Advisory Committee (MSAC), ‘Public
summary document: renewal of the National Cervical Screening Program’, MSAC
application, 1276, MSAC meeting, 3–4 April 2014, p. 9.
Cervical screening in Australia 2013–2014, op. cit.
are listed at DoH, ‘About
the program register’, DoH webpage, last updated 5 November 2013.
Cytology Service (VCS), ‘What
we do’, VCS webpage.
Institute NSW, ‘History of the
Cancer Institute NSW’, Cancer Institute NSW webpage, published 13 July
Memorandum, National Cancer Screening Register Bill 2016, op. cit., p. 8.
of Australian Governments (COAG) Health Council, ‘Communique’,
COAG Health Council meeting, Darwin, 7 August 2015.
Bowel Cancer Screening Program’, DoH webpage.
sheet: bowel cancer’, DoH webpage, May 2016, page last updated 22 September
measures: budget paper no. 2: 2014-15, 2014, p. 129. The expansion was
also a Coalition election commitment, Liberal Party of Australia and the
Coalition's policy to support Australia's health system, Coalition
policy document, August 2013, p. 14.
Memorandum, National Cancer Screening Register Bill 2016, op. cit., p. 3.
the Program’, DoH webpage, page last updated 2 May 2016.
National Bowel Cancer Screening Program: monitoring report 2016, Cancer series, 98, AIHW, Canberra, 2016, pp. 16–17.
Ley (Minister for Health and Aged Care), New
National Cancer Register aims to save lives, media release, 31 August
Standing Committee for Selection of Bills, Report,
5, 2016, The Senate, 1 September 2016.
Standing Committee on Community Affairs, Inquiry
into the National Cancer Screening Register Bill 2016 and National Cancer
Screening Register (Consequential and Transitional Provisions) Bill 2016,
The Senate, Canberra, 2016.
King (Shadow Minister for Health), Transcript
of doorstop interview: Canberra: 13 May 2015: Cancer Council Biggest Morning
Tea, transcript, 13 May 2015.
Labor Party (ALP), National
Platform: a smart, modern, fair Australia, ALP policy document, 18
August 2015, p. 110.
King (Shadow Minister for Health), Turnbull
continues Medicare privatisation, media release, 26 May 2016.
King (Shadow Minster for Health), Transcript
of interview with Michael Brissenden: ABC AM: Medicare privatisation; same sex
marriage plebiscite; Labor candidate for Farrer, transcript, 20 June
that firms could profit from cancer data’, Canberra Times, 27 May
2016, p. 4.
register right for women, media release, 31 August 2016.
Health Forum, Cancer
register boosts fight against bowel and cervical cancers, media
release, 1 September 2016.
wins contract for new National Cancer Screening Register’, ABC news,
26 May 2016.
over privacy as Telstra wins deal to manage cancer patients' records’, Canberra
Times, 26 May 2016.
needed on Telstra Health’, The Australian, 7 June 2016, p. 28.
A serious data breach by Telstra in 2013 prompted an investigation by the
Australian Privacy Commissioner, see, P Wood, ‘Telstra
information leak breached laws’, Herald Sun, 12 March 2014.
data a national asset; how will Telstra deliver on cancer registries?,
media release, 26 May 2016.
Legislation Amendment (eHealth) Bill 2015, Bills digest, 41, 2015–16,
Parliamentary Library, Canberra, 2015, p. 10, p. 14.
poll: Australians will share their personal health data if privacy protected,
media release, 7 September 2016.
Carter, ‘Telstra wins contract for new National Cancer Screening Register’, op.
attacked over $220 million cancer screening register contract win’, ITWire,
26 May 2016; see also M Kenny, ‘Fears over privacy as Telstra wins deal to
manage cancer patients’ records’, op. cit.
Health Council, Communique,
COAG Health Council meeting, Darwin, 7 August 2015.
Memorandum, National Cancer Screening Register Bill 2016, op. cit., p. 2.
‘Scrutiny needed on Telstra Health’, op. cit.
Statement of Compatibility with Human Rights can be found at page 3 of the
Explanatory Memorandum to the NCSR Bill and at page 5 of the Explanatory
Memorandum to the Consequential Bill.
. Privacy Act 1988.
Memorandum, National Cancer Screening Register Bill 2016, op. cit., p. 11
participating state or territory is one that has agreed with the Commonwealth
to participate in the register (clause 4).
penalty unit is currently equal to $180, so the maximum civil penalty is
currently $5,400 (subsection 4AA(1) of the Crimes Act 1914).
v Commissioner of Taxation (2009)
238 CLR 1, 
HCA 23; Williams v Commonwealth of Australia (2012) 248 CLR 156, 
HCA 23; and Williams v Commonwealth of Australia (2014) 252 CLR 416, 
penalty unit is currently equal to $180, therefore the maximum pecuniary
penalty under this provision is $21,600 (subsection 4AA(1) of the Crimes Act 1914).
information and key information are defined in clause 4 and are
where a burden of proof is placed on a defendant it is an evidential burden only
Act 1995, subsection 13.3(1)). The evidential burden can be discharged
by the defendant pointing to evidence suggesting there was a reasonable
possibility that a matter existed or did not exist (Criminal Code,
Regulatory Powers Act ‘seeks, over time, to systematise the monitoring
and investigatory powers provided to Commonwealth regulatory agencies. To do
that, the [Act] seeks to act as the standard framework to which other
legislation refers, in order to trigger its provisions that are relevant to a
particular agency or authority’ – see J Murphy, Regulatory
Powers (Standard Provisions) Bill 2014, Bills digest, 73, 2013–14,
Parliamentary Library, Canberra, 2014, p. 3.
Immunisation Register Act 2015.
. Freedom of
Information Act 1982.
Murphy, Regulatory Powers (Standard Provisions) Bill 2014, 2014, op. cit., p.
11; for an explanation of proposed section 18 of the NCSR Act.
Memorandum, National Cancer Screening Register (Consequential and
Transitional Provisions) Bill 2016, p. 10.
. Health Insurance
Memorandum, National Cancer Screening Register (Consequential and Transitional
Provisions) Bill 2016, op. cit., p. 10.
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