Cancer register bill passes with amendments
The new National Cancer Screening Register will begin in May 2017 after legislation passed federal Parliament – with amendments after the AMA and other groups raised concerns about privacy.
The new Register will replace eight separate State and Territory cervical cancer screening registers and the paper-based national bowel cancer screening system, allowing more timely and efficient notification and follow-up.
“Cervical and bowel cancers are largely preventable with regular screenings,” Health Minister Sussan Ley said.
“The Australian Government remains committed to saving lives through more efficient screening processes and co-ordination, and the new national register is an important part of this process.”
The draft Bill was amended to strengthen the privacy provisions in the Bill. The contractor will be forced to notify the Australian Information Commissioner and Health Department Secretary of any breaches of data.
The changes came after the AMA, the Australian Information Commissioner, and other health groups raised concerns about the potential for privacy breaches, and called for highly rigorous and ethical safeguards.
Related: Cancer registry privacy fears
The AMA also criticised the lack of transparency around the process for awarding the contract to Telstra Health.
“The awarding of such a contract to an entity that has hitherto had no direct role in establishing or operating a register of this kind sets a challenging and potentially troublesome precedent,” the AMA submission to the Senate inquiry into the legislation said.
“The AMA therefore would welcome a detailed explanation and assurance from the Department of Health, as well as independent privacy and data experts, that the entity awarded the contract has the capacity to deliver it as contracted, and that every assurance can be given as to how sensitive health and medical data will be stored, how any potential breaches will be addressed, and what arrangements are to be put in place to manage the transition of nine separate cancer screening registers into a single National Cancer Screening Register.
“Given the potential commercial value of the data contained in the register, the AMA would be more comfortable with it being operated by government, a tertiary institution, or not-for-profit entity that has little interest in how the data in the register might otherwise be used.
“This would go a long way to allaying concerns about the secondary use of data for commercial reasons.”
Labor also criticised the Government’s decision to sign the contract with Telstra before legislation had been presented to parliament.
“Labor has said from the outset that we support the National Cancer Screening Register, but given the volume of sensitive health information at hand, it is critical to get it right,” Labor health spokeswoman Catherine King said.
“The passing of this legislation does not lessen the fact that Australians are still owed a clear explanation about why, only days before calling the election, the Turnbull Government rushed to sign a contract with Telstra.”
Labor tried but failed to amend the bill further to mandate that the Register be run only by a Government agency or a not-for-profit body, to ensure consumers are notified of data breaches, and to impose more severe penalties for data breaches.
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