Nicola Roxon (Gellibrand, Australian Labor Party, Shadow Attorney-General) Share this | Hansard source

I rise today to speak on the Privacy Legislation Amendment Bill 2006. As all of us in this House know, privacy protection is emerging as one of the most important policy issues of our time. We are increasingly aware of the threats to the use of our personal information in the contemporary environment where so much of our personal information is available, collected and shared. Labor believes that our privacy laws need to strike a balance between the value of sharing information for the benefit of both individuals and the wider community and privacy considerations that are needed to protect an individual’s personal information.

This bill addresses three separate issues. You will see during the debate today, Mr Deputy Speaker, that we believe that the bill does strike the balance which Labor is concerned to ensure that privacy legislation does strike. Firstly, the bill amends the National Health Act 1953 and the Privacy Act 1988 to allow for the collection by medical practitioners of health information about their patients in order to monitor suspected excess use of prescription medicines. Secondly, the bill provides privacy protection for human genetic information under the Privacy Act 1988. Thirdly, the bill prescribes circumstances where health professionals are permitted to disclose genetic information about a patient to their genetic relative.

Labor support this bill as we believe the measures it contains effectively strike the delicate balance that is needed. It provides a regime that helps protect the integrity of our prescription drugs system and will provide greater clarity and assurance to health professionals around the collection and disclosure of personal and genetic information while simultaneously addressing the privacy concerns of Australian citizens. I will deal with each of these parts separately.

Schedule 1 of the bill inserts a new section 135AC into the National Health Act so that, when health information is disclosed lawfully under a health law or the Medicare Australia Act 1973, any subsequent collection of that health information will be deemed to be authorised under the Privacy Act. Schedule 1 also amends the national privacy principles—10.2(b)(i) in schedule 3 of the Privacy Act, which deals with the collection of sensitive information. The amendments in schedule 1 will ensure that medical practitioners may utilise information concerning their patients through the prescription shopping information service without breaching the national privacy principles.

These changes are largely due, it must be said, to the mismanagement and incompetence to date of the Howard government in the management of the health portfolio. In 2002 it ill-advisedly disbanded the highly successful doctor shopping hotline which had provided an efficient system for GPs to access the prescription history of patients who were suspected of excessive Medicare consultations or prescriptions. A busy GP could simply call the doctor shopping hotline and confirm that a suspicious patient was on the doctor shopping list. Clearly, the misuse of Australia’s medical and prescription services is an issue of legitimate public concern—a health issue that does need continuous monitoring and attention. The doctor shopping hotline was widely acknowledged as having successfully reduced Medicare services, PBS subscriptions and overprescription of particular drugs such as codeine compounds and narcotic analgesics. Yet with little real explanation, the doctor shopping hotline was dropped in 2002.

In place of the doctor shopping hotline, the government promoted the poorly designed Prescription Shopping Information Service. It was proposed to expand the program from the three drug groups used for the doctor shopping hotline to cover all PBS drugs—an initiative that clearly could have increased its value. However, this initiative was never fully implemented as privacy concerns severely impeded the new system. Under the PSIS, doctors could only obtain PBS data about their patients if the patient voluntarily consented and then it took seven to 10 days to get the prescription records. Clearly, these practical limits decreased its value to the community because it was so slow and difficult for doctors to use.

These onerous procedures in the PSIS undermined the value of the entire system for monitoring potential abuse of the health system, a fact that the Minister for Health and Ageing, Mr Abbott, seemed only to realise when it was revealed on ABC’s 7.30 Report in late 2004 that a coronial inquest in Cairns had found that the decision of the federal government to abandon the doctor shopping hotline was a significant factor in the death of a young man from legally prescribed methadone and other drugs.

Belatedly, Minister Abbott took action in February 2005 to ensure that the PSIS could operate more effectively. A temporary public interest determination was made by the Federal Privacy Commissioner, which was granted under sections 80A and 80B of the Privacy Act in order for the system to operate properly and have the coverage that was clearly desirable. The determination, initially made in February 2005 and extended in February 2006, ensured that doctors could receive PBS prescribing information about their patients without contravening privacy legislation. That temporary determination is due to expire on 22 December this year.

Schedule 1 of this bill will now formalise in legislation that temporary public interest determination made by the Federal Privacy Commissioner, and finally, belatedly and—I might say, hopefully—will allow for the effective operation of the Prescription Shopping Information Service. The PSIS is a good illustration of when personal information can be used in a manner that benefits the community as a whole, yet in these circumstances it is still important that a balance is achieved in protecting the privacy of individuals’ personal information.

Accordingly, Labor supports this schedule. Labor also supports the second set of measures contained in this bill which provide privacy protection for genetic information under the act. Genetic technology offers huge potential for better medical diagnosis and treatment: it is increasingly being utilised by medical practitioners and researchers as a diagnostic tool to detect a range of inherited disorders, to confirm or disprove the results of other diagnostic tests, and as a predictive indicator of whether an individual might be affected by, or be susceptible to developing, an inherited disorder later in life. Genetic information may provide genetic relatives with life and health options otherwise unattainable, assisting and making decisions about diet, parenthood, work and lifestyle.

As genetic technology advances and more and more information is learnt about diseases, traits and predispositions, the promise of scientific and medical applications that will benefit the whole community clearly grows. However, these rapid advances in human genetic technology over the past decade have raised concerns regarding the capacity of the Privacy Act to adequately protect the privacy of human genetic samples and information. Genetic information used in a way other than initially intended may cause considerable harm. We must remember that people identified with unfavourable genetic dispositions may face discrimination or preferential treatment in a variety of arenas—in the provision of health and life insurance, employment or access to sport. Genetic information may also be used in a manner not originally intended in parentage testing or immigration matters.

It is for these reasons that Labor believes that the vast potential of genetic material must be balanced by laws and systems that protect personal information from misuse and provide for its proper use and handling. Australians need to have faith in the effective public regulation of their personal information, particularly when it is of such a sensitive nature. These amendments are a positive move in this direction, providing privacy protection for genetic information within the existing framework of the Privacy Act.

Schedule 2 of the bill extends the existing definitions of ‘health information’ and ‘sensitive information’ in the act to include genetic information about an individual. This will mean that genetic information will now explicitly attract private protection under the national privacy principles, and thereby help to protect an individual’s genetic identity and information.

The third set of measures in this bill prescribes circumstances where health professionals are permitted to disclose genetic information about a patient to their genetic relative under the Privacy Act. This part of the bill provides clarity to health professionals when they are faced with the potentially awkward situation of possessing information about a patient that would threaten the life or health of their genetic relative, but the patient is reluctant to convey that information to their genetic relative. It is a thorny issue, but one that can have life and death consequences. Therefore, the potential folly of stopping doctors from using information when it might be vital for the wellbeing of a patient’s genetic relative is apparent.

Schedule 2 of the bill deals with this difficult but important issue in the following ways. Firstly, the bill inserts a new definition of ‘genetic relative’ to include any other individual who is related by blood to the first individual, including a sibling, parent or descendant. According to the explanatory memorandum, this definition would also cover grandparents of the individual. The bill then inserts a new section 95AA to the Privacy Act, which provides for the approval of guidelines issued by the National Health and Medical Research Council relating to the use and disclosure of genetic information to a genetic relative of an individual for the purposes of lessening or preventing a serious threat to life, health or safety of that genetic relative. New subsection 95AA(3) provides for an application to the AAT for review of the Privacy Commissioner’s refusal to approve those guidelines.

Schedule 2, item 5 inserts a new paragraph (ea) to the national privacy principle 2.1 of schedule 3 of the Privacy Act. Under new paragraph (ea) a health professional may be permitted—but is not obliged, I might note—to disclose genetic information about a patient to their genetic relative in circumstances where it is reasonably believed that the use or disclosure of the genetic information is necessary to prevent a serious threat to life, health or safety of the genetic relative. The organisation must reasonably believe that the use or disclosure of genetic information is necessary to prevent a serious threat to the life, health or safety of the genetic relative, whether or not the threat is imminent. Such disclosure must be in accordance with the guidelines approved by the commissioner under new section 95AA.

Clearly, reading through the technical way these provisions need to interact with each other, anybody in this House—and I think in the general public—would understand the difficult balance a health professional might face in making a decision whether to disclose such information. But what I think is important about this piece of legislation is that it enables doctors to use their proper medical judgement to make that assessment. It gives a set of circumstances where it is appropriate and ensures that information cannot be passed on in irresponsible or inappropriate ways. It is clearly a difficult circumstance which I am sure many of us hope we are never in but, increasingly, with this information and genetic developments that are occurring in our scientific and medical communities, these are questions we will have to face in the future.

So, whilst we welcome the amendments, Labor considers that the measures are long overdue. The changes address longstanding concerns surrounding privacy protection for genetic information and implement only a small number of the recommendations of the joint inquiry of the Australian Law Reform Commission and the Australian Health Ethics Committee into the protection of human genetic information, which reported way back in May 2003. Mandated by former Minister Williams and Minister Wooldridge to ‘examine the complex and significant privacy, discrimination and ethical issues posed by advances in gene technology’, the inquiry was asked to consider whether laws were needed not only to protect the privacy of genetic samples and information but also to provide protection from inappropriate discriminatory use of genetic samples and information and to balance the relevant ethical considerations related to the collection and use of such samples and information in Australia.

Unfortunately these other aspects have not been taken up or acted upon as yet by the government. The two-year inquiry, according to the Law Reform Commission’s president, David Weisbrot, represented ‘the most comprehensive consideration of the ethical, legal and social implications of the ‘new genetics’ ever undertaken’. The resulting report, which was called Essentially yours: the protection of human genetic information in Australia, has gained widespread overseas attention and praise. The report made some 144 recommendations dealing with the ethical, legal and social implications of human genetic material. I am pleased the Attorney is here, because I do not for a moment think that 144 recommendations can be acted on instantaneously. But clearly it is important for us to ensure that we take up the full range of these issues—not just the handling of information but dealing particularly with some of the discriminatory issues that might flow from the use of this sort of information. A number of other very important issues were raised in the Law Reform Commission report, and we urge the government to take action on them.

As I say, some of these recommendations have been acted on. For example, the establishment of a new Human Genetics Advisory Committee, a standing advisory body on human genetics to provide advice to Australian governments about current and emerging issues in human genetics, was announced last month. Other recommendations are under consideration by a variety of federal and state agencies. But we do note—and I repeat my concern—that recommendations to address a range of associated issues, such as consensual genetic testing and discrimination arising from genetic information, are important aspects of this debate that require legislative attention but appear to have so far been ignored. Labor looks forward to the government tackling these important issues promptly.

In summary, Labor supports the bills that are before the House and welcomes the government’s effort to tidy up the legislation in these two important areas. Australians need to be able to be confident that their personal information is protected and not liable to unscrupulous abuse. At the same time, it brings me back to where I started in this speech: the community has a wider interest in it being permitted in certain circumstances to use people’s personal information. We need to take care in this House to get that balance right. Labor believes the government has been able to do that in this piece of legislation.

See this speech in context