Named reporting of HIV: A positive step for public health?

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In Australia, doctors must notify public health authorities of new cases of HIV/AIDs. However, strict confidentiality requirements apply to the testing, treating and notification of HIV, protecting the identity of patients.

As part of its review of the New South Wales Public Health Act 2010, the Department of Health is considering whether to remove these confidentiality requirements from NSW public health legislation. Is this a move that should be welcomed by health care professionals and patients?

Infectious disease notification

All Australian jurisdictions have laws that require the notification of certain infectious diseases. In NSW, notification requirements can be found in the Public Health Act 2010, which creates five categories of diseases that must be reported by medical practitioners, pathology laboratories, and hospitals, including HIV/AIDs.

Section 56 of the Act places confidentiality requirements on information relating to a patient’s HIV status. There are three main components to section 56:

  • Notifications for HIV/AIDs must be made in a de-identified format;
  • A person’s identifying details must not be used when arranging a diagnostic test for HIV (except in hospital situations or with the person’s consent);
  • A person who, in the course of providing a service, obtains information that an individual has been tested for HIV or has HIV/AIDs, must take reasonable steps to prevent that information from being disclosed. However, the information may be disclosed to a person involved in the provision of care of the patient, so long as it is relevant to the provision of such care.

Section 56 allows for disclosure of identifying information in certain other circumstances, including if there are reasonable grounds to suspect that failure to disclose the information would likely be a risk to public health. This allows for the Secretary of the Department of Health to identify and manage HIV positive individuals who pose a risk to the health of others, including (as a last resort) through public health orders that allow for the mandatory treating and detention of patients living with HIV.

Review of the Public Health Act 2010 (NSW)

NSW Health recently published a discussion paper on the review of the Public Health Act 2010 (NSW). The Ministry’s preliminary view is that HIV-specific confidentiality protections should be wound back. The paper notes several difficulties that stem from the confidentiality requirements for HIV notification:

  • De-identified notification increases the likelihood of duplicate testing and errors in notification, and impacts negatively upon the collection of epidemiological data, surveillance, and monitoring, and follow-up care of HIV positive patients;
  • Confidentiality requirements create a barrier to testing for HIV in combination with testing for other conditions as there are different consent procedures for HIV tests and other tests; and
  • They prevent healthcare professionals from being informed of patients’ HIV status where they are not providing treatment directly related to the patient’s HIV condition, but it would assist in providing care to know about the patient’s status (given that HIV and ART treatment have a range of health implications).

The policy of de-identifying HIV/AIDs notifications was first developed in the 1980s, at a time when most HIV infections occurred in gay men and there was considerable stigma and discrimination against the gay community and those living with HIV/AIDs. At that time, no effective treatment options were available for HIV/AIDs, making it a terminal condition. Many activists, clinicians, and community organizations were strongly against notification, and confidential notification provisions were adopted to encourage at-risk individuals to access HIV testing and care without fear of recrimination or discrimination.

The situation has changed significantly since then. Anti-retroviral therapy (ART) has made HIV a manageable, chronic condition, and has demonstrable benefits in preventing onwards transmission. Community attitudes towards the gay community and people living with HIV have changed considerably over the past 30 years, assisted by the introduction of laws that address discrimination and privacy concerns.

The discussion paper lists a number of benefits that would flow from rolling back HIV-specific confidentiality requirements:

  • Named notification would enable more accurate epidemiological data on HIV to be collected, for example, by allowing for better linking of HIV notifications with notifications of other conditions, which would assist with tracking and managing HIV co-infections; and
  • It would potentially allow better service provision and care of people living with HIV: one outcome would be that it would enable public health officers to follow up with HIV positive patients directly; liaise with clinicians; and refer people living with HIV to the relevant health services.

However, there is significant disagreement between NSW Health and HIV activists over whether named reporting would improve epidemiological data and access to care. Advocates argue that while named reporting may provide some benefit, this would be outweighed by its impact on privacy, testing, surveillance, and treatment.

HIV remains heavily stigmatized, and many people living with HIV continue to experience discrimination. These concerns are particularly relevant given that NSW criminalizes individuals with HIV (and other STIs) who fail to disclose their condition to their sexual partners.

Named reporting may deter people from being tested for HIV, particularly people from culturally and linguistically diverse backgrounds, recent migrants, highly sexually active men with multiple STIs, sex workers, and non-gay identifying men who have sex with men. People diagnosed with HIV may also be less willing to report sensitive personal information (e.g., injecting drug use), particularly if it could be used for law enforcement purposes. This would undermine the effective care of people living with HIV, as well as the quality of population-level data.

Advocates recognize that making information about a person’s HIV status, co-morbidities, and treatment regimen more widely available in clinical settings could improve care outcomes. However, they say that there are not enough examples of non-disclosure causing adverse effects to warrant the proposed changed, and the amendment would undermine the right of people living with HIV to disclose their HIV status to medical and healthcare workers at a time of their choosing.

Winding back “HIV exceptionalism”?

Writing on the legal environment of sexual health care practice, Roger Magnusson describes HIV as an “exceptional STI,” with unique legislation regulating counselling, diagnosis, and reporting of HIV. The central concerns of this legislation are the provision of supportive treatment and maintaining patient confidentiality.

Professor Magnusson describes how some countries are now winding back HIV exceptionalism, for example, in the US, CDC guidelines now recommend opt-out screening for all patients, i.e., patients are notified that screening will take place unless they decline consent. Some states, such as California, have adopted these recommendations, and while anonymous testing is still offered in many states, named HIV reporting is now the norm.

Notification of HIV/AIDs is a contentious subject, engaging issues around rights to privacy and autonomy, as well as on the role notification plays in data collection, testing, and treating. Many jurisdictions are streamlining the legal treatment of HIV testing with that of other infectious diseases; the question is whether NSW will – or should – do the same.

Central Queensland Hospital v Q: Access to abortion in Queensland and children’s ability to consent to medical treatment

 

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The decision in Central Queensland Hospital and Health Service v Q raises interesting issues in relation to the criminalization of abortion in Queensland and children’s ability to consent to medical treatment.

Q was a pregnant 12 year old girl who was referred to medical staff at the Central Queensland Hospital after asking her GP for an abortion. Q was finding the pregnancy “very stressful emotionally” and had run away from home, self-harmed, and attempted suicide on two occasions.

The medical specialists and counselors that had met with Q supported her decision to terminate the pregnancy, as did Q’s parents. There was evidence that continuing the pregnancy would pose significant risks to Q’s physical and mental health.

Central Queensland Hospital sought orders from the Court authorizing the termination of Q’s pregnancy. These were granted by Justice McMeekin in the Queensland Supreme Court on the 20th of April, followed by the judge’s reasons a week later.

The parens patriae jurisdiction

The Supreme Court’s parens patriae jurisdiction formed the basis for the Court’s intervention. This jurisdiction grants Supreme Courts wide powers in relation to the welfare of children, with the best interests of the child being the Court’s primary consideration.

Could Q consent to the treatment?

As I discuss in an earlier post, a child can consent to medical procedures when he or she “achieves a sufficient understanding and intelligence to enable him or her to understand fully what is proposed,” i.e., is Gillick competent (following Gillick v West Norfolk & Wisbech Area Health Authority [1986] AC 112).

Generally speaking, parents can consent to treatment on children’s behalf when they are not Gillick competent. However, there are some forms of treatment that fall outside the scope of parental consent, known as “special medical treatment.”

Justice McMeekin held that terminations are one such form of treatment (following State of Queensland v B [2008] QSC 231). Accordingly, court authorization for the treatment would be needed if Q herself was not competent to consent to the treatment.

Justice McMeekin found that Q had a good understanding of the risks involved in the procedure, but doubted that she had the maturity to fully appreciate the long-term consequences of a decision to continue with the pregnancy. Accordingly, she was unable to make a fully informed decision and was not competent to consent to the termination. As such, it was appropriate to invoke the Court’s parens patriae jurisdiction.

Could the treatment be performed lawfully?

Queensland’s Criminal Code criminalizes the termination a pregnancy, unless authorized or justified by law. Section 282 of the Code provides that a person is not criminally responsible for performing a termination so long as it is for the patient’s benefit or to preserve the mother’s life, and is reasonable in the circumstances.

Section 286 of the Code also provides that a “person who has care of a child” must provide the necessaries of life for the child, and take reasonable precautions to prevent danger to a child’s health, including their mental health. The definition of “a person who has care of a child” can include hospitals and doctors who care for children.

In determining whether the termination was lawful, Justice McMeekin followed the approach of the Victorian Supreme Court in R v Davidson [1969] VR 667, which held that an abortion would be lawful where it was believed on reasonable grounds that the abortion was necessary to prevent serious danger to the patient’s life or health, and it was not out of proportion to the danger to be averted.

Justice McMeekin held that it was clearly in Q’s best interests for termination of the pregnancy to proceed, as it was necessary in order to prevent serious danger to Q’s mental and physical health. Further, the proposed response was not out of proportion to the danger to Q’s health. Accordingly, the termination would not be considered unlawful, and it could be justified under sections 282 and 286 of the Code.

Justice McMeekin declared that: the termination of the pregnancy through the administration of drugs was lawful; Q should be permitted to undergo the termination; and the hospital’s staff be permitted to perform it. If the drugs failed to effect a termination within five days, Q’s pregnancy could be terminated using a surgical procedure.

What are the implications of the decision for access to abortion services in Queensland?

The criminalization of abortion in Queensland creates a barrier to women’s access to reproductive services. Q was forced to wait weeks for court authorization for her termination. In 2010 a young Cairns couple faced criminal charges for importing the abortion drug Misoprostol and inducing a miscarriage at home. They were ultimately found not guilty, but following that case, many doctors in Queensland stopped performing abortions.

Lucy Clark in The Guardian suggests that similar fears and uncertainties may be behind Q’s doctors’ decision to seek court authorization for her treatment. She may be right in that respect, but it must be kept in mind that the Queensland Supreme Court characterizes abortion as a form of “special medical treatment” that parents cannot consent to. Accordingly, court authorization would still be needed to perform a termination on a child that was not Gillick competent, regardless of abortion’s status under criminal law.

Kerridge, Lowe and Stewart criticize the characterization of abortion as a form of special medical treatment, arguing that it should fall within the scope of parental consent for children’s medical treatment. A change in the common law would be required in order for a termination to be performed on a non-Gillick competent child without court authorization (although the courts could still intervene under their parens patriae jurisdiction).

Nevertheless, the decriminalization of abortion in Queensland is still an important step in enhancing respect for women’s reproductive rights, and in ensuring access to abortion services.

NBOT Annual Workshop – Call for Papers

Date: 10 March 2016

Venue: Sydney Law School, University of Sydney

In March, the Network for Bodies, Organs and Tissues (NBOT) will host its annual multi-disciplinary workshop on bodies and tissues. The event provides a forum for discussions of moral, ethical and regulatory issues relating to the access and control of tissue. The Network welcomes papers that examine the challenges posed by the different uses of tissues (e.g. reproductive, therapeutic, regenerative, research, education, etc.), and debates about how to manage and resolve body-based conflicts. It encourages contributions from a diverse range of disciplines, and which explore the broader implications of changes in the way we regard the human body, organs and tissues.

We are currently calling for expressions of interest from Network members and their colleagues.

Please send abstracts (200 words) to cameron.stewart@sydney.edu.au by Friday 19 February 2016.We encourage you to pass this invitation onto students and other interested colleagues who wish to speak about their research in an encouraging and supportive environment.

Attendance at the workshop will be free but registration is essential.  Register here