10/11 Rosebank Street

Glebe 2037

4.9.00

Privacy NSW

PO Box A2122

Sydney South, NSW 1234

Dear Sir/Madam

SUBMISSION TO THE NSW MINISTERIAL ADVISORY COMMITTEE ON PRIVACY AND HEALTH INFORMATION

I would like to make the following submission to the NSW Ministerial Advisory Committee on Privacy and Health Information. It addresses the first of the Committee’s terms of reference, which is:

Deliver a report to the Minister that provides effective strategies to ensure NSW Health and its partners in health services delivery, ensure personal health information is collected, stored and used in accordance with NSW and Commonwealth privacy principles, as applicable.

My major interest in making this submission is to promote a coordinated and appropriate policy approach to privacy issues related to health and also to violent crime prevention and management. My particular concern is the handling of DNA in a manner which promotes community and child health and justice and also protects privacy.

Violent crime and related DNA management are health issues

Violence affects the health of victims and the community, and DNA collection and management needs to be addressed in this community health context. In 1986, the World Health Organisation (WHO) Ottawa Charter stated that the necessary supports for health include peace, shelter, food, income, a stable economic system, sustainable resources, social justice and equity. The Charter called for the development of public policy and the reorientation of health services, as well as community action and education to support health goals. In May 1996 the WHO adopted a policy statement on ‘The Prevention of Violence: Public Health Priority’, sponsored jointly by the Republic of South Africa and Australia. The resolution declares that violence is a leading worldwide public health problem. WHO is preparing a publication entitled World Report on Violence to be released in 2001.

In September 1999 the Australian Institute of Criminology ran a roundtable seminar on Public Health Perspectives on Interpersonal Violence. This was followed by McDonald’s report on Violence as a Public Health Issue (Aust. Institute of Criminology, 2000). It points out that the Australian National Health Priorities which were adopted in 1994 focus on interpersonal violence as a component of intentional injury, and that Australian governments have set the following specific goals:

  • reduce mortality due to interpersonal violence; and
  • reduce morbidity due to interpersonal violence

The policy document states the injury prevention and control community is in a position to make a significant contribution to the prevention of violence in three ways:

  • Promoting the recognition, by government and the community, that violence is a health problem which, like other health problems, can be prevented through the use of surveillance and other data collection systems, the identification of high risk groups, and the development and implementation of preventive strategies
  • Contributing to programs that address the barriers to prevention. For example, social norms and attitudes and models that accept violence and the public perception that violence is inevitable.
  • Defining violence as an important public health problem (Aust. Institute of Criminology, 2000)

The NSW Health Council (03/2000) recently made a series of health recommendations which have been supported and funded by the NSW Minister for Health, and ten groups have been established to implement these Health Council plans, including the introduction of electronic health records. A National Electronic Health Records Taskforce has also been established.

An appropriate number of crime prevention groups now also need to be established and funded by the Premier to ensure an effective cross-portfolio approach. These groups could implement directions outlined in the range of reports already produced by NSW government on crime prevention and social support, prisons, juvenile justice and related issues such as drug abuse. The work of these groups should be effectively coordinated with plans already being undertaken by the NSW Health Council. For example, the DNA collected when a baby is born and tested for certain rare diseases establishes one of its earliest health records. The consideration of DNA issues should therefore be an early priority for the National Electronic Health Records Taskforce.

The appropriate balancing of privacy and public health issues have always been a major concern in the health industry, and this is reflected in the NSW Health Department’s Information Privacy Code of Practice (1998) which deals with sensitive health issues such as the notification of public health risk for HIV, and cross portfolio issues such as the notification of suspected child abuse, and the obligation to notify police of certain other information. The methods of collecting, using and storing a person’s DNA clearly require consideration in this health policy context and also in the light of the ‘Framework for Managing the Quality of Health Services in NSW” (1999) which has been developed by the Quality for NSW Health Steering Committee.

Rec. 1: An appropriate number of crime prevention groups need to be established and funded by the Premier to ensure an effective cross-portfolio approach to health. These groups could implement directions outlined in the range of reports already produced by NSW government on crime prevention and social support, prisons, juvenile justice and related issues such as drug abuse. The work of these groups should be effectively coordinated with plans already being undertaken by the NSW Health Council.

Rec. 2: The collection, use and storage of DNA from murder, rape, or other crime suspects ought to be addressed in the context of violence as a health issue. The structures for managing DNA collection, use and storage should therefore be established in the light of the:

  • Deliberations of the National Electronic Health Records Taskforce
  • NSW Health Information Privacy code of practice (1998)
  • ‘Framework for Managing the Quality of Health Issues in NSW’ (1999) developed by the Quality for NSW Health Steering Committee.

The wider context of crime related DNA management

The appropriate management support to be provided for the Crimes (Forensic Procedures) Act 2000 requires further consideration in the light of the management requirements of health and privacy issues addressed earlier, and in the light of the Crimes Act. In addition, the role and location of the proposed Institute of Forensic Science, which was announced by the Director of Public Prosecutions in February 2000, should be discussed in this context.

The Commonwealth Privacy Commissioner’s Report on the privacy implications of genetic testing (September 1996) has major implications for the appropriate recording of health data, including DNA which is gathered from crime suspects and matched with DNA from the crime scene or related relevant places.

The Privacy Commissioner’s paper covers privacy issues involved in the collection of genetic information in the following areas:

  • Employment
  • Health/life insurance and superannuation
  • Law enforcement (identification aspects of genetic testing); and
  • Scientific research

It is clear that health is either the primary or a major consideration in all the above contexts. For example, injury prevention is a major national health goal, and the reduction of injuries at work, as a result of better management of state occupational health and safety (OHS) acts, was discussed in a recent inquiry into the NSW workers’ compensation system (Grellman, 1997), and is a necessary condition for achievement of that goal.

Work related violence, bullying, stress, and harassment are all health issues, and so is the rehabilitation of injured workers. Current lack of effective coordination in regard to employment, insurance and superannuation policy already creates a range of unintended, inequitable outcomes. It would be a great pity to increase the existing range of problems by adding un-coordinated, and therefore irrational and inequitable DNA policy to the list.

In regard to law enforcement, the Privacy Commissioner’s paper claims that DNA profiling can accurately determine whether two DNA samples do or do not come from the same individual. It states that:

  • DNA testing can be used to determine that body tissue deposits left at the scene of a crime come from a suspect. It can also determine that they did not. For example, in the solution of crimes such as hit and run accidents a match may be established between the DNA of the victim and the DNA found in blood or tissue on the suspect’s car. By establishing that the two samples do not match, it can also clear a suspect.
  • DNA testing can give a clear indication whether a series of crimes, such as serial rapes, have been committed by the same person. For example, DNA identification was used in Victoria to link together a series of later rapes once a guilty plea had been made to an earlier one.
  • DNA testing can determine cases of disputed paternity. (p.31)

However, in order to determine the probability that a biological specimen associated with the unknown perpetrator (like a blood stain at the scene of the crime) and a sample from the known suspect both come from the same person, it is necessary to know about the distribution of genetic characteristics in the population at large. The Privacy Commissioner’s paper goes on to state:

For example, if the DNA profile of the blood left at the scene is carried by one person in three, it is quite likely that the blood came from someone other than the suspect; if that profile is carried by one only in 30,000 it is unlikely to have come from someone else. Note that DNA testing cannot tell us whether the blood at the crime scene came from the person who committed the crime.

Since their function is to provide statistical information about the genetic characteristics of the society as a whole, population databanks do not, by and large, require the identity of those contributing information to be recorded. (p.36)

I have quoted parts of page 31 and page 36 of the paper verbatim or almost verbatim because I find them important but rather confusing. However, it seems clear that the most reliable information is likely to be gained from the largest possible deidentified data bank of DNA and that this can best be obtained if DNA issues related to employment, health/life insurance and superannuation, law enforcement and scientific research are managed by a single body, which is situated in the health portfolio rather than being split between several jurisdictions.

Levels of community trust are also likely to be enhanced if DNA issues are managed primarily through the health portfolio, as this is the jurisdiction which, almost certainly, has historically had the most strongly developed levels of concern and related policy development about appropriate relationships between community and individual health, privacy and research.

Rec. 3: DNA issues relevant to employment, health/life insurance, superannuation, law enforcement and related research should be managed by a single body, which is situated in the health portfolio.

  • The appropriate management support to be provided for the Crimes (Forensic Procedures) Act 2000 requires consideration in the light of management requirements of the Crimes Act and the health and privacy agendas addressed earlier.
  • the role and location of the proposed Institute of Forensic Science should be discussed in this context

A view on a ‘health broker’ in DNA collection related to crime investigation

The search for a rapist by undertaking comparative DNA profiling of male volunteers in the country town of Wee Waa recently stimulated a strong debate about the merits and dangers of DNA profiling. In an article in the Sydney Morning Herald (15.5.00; p.17) Dr Leslie Burnett, head of the laboratory and community genetics unit at the Kolling Institute of Medical Research, and Clinical Associate Professor in Pathology at the University of Sydney, wrote:

“Our hearts go out to the victims of crime. All of us would like to support our police force and make available to them the new investigative tool of DNA profiling. But how can this be arranged with adequate safeguards, and without compromising the fundamental principles of civil liberty?”

He goes on to say that:

“The key to anonymous forensic genetics testing is the introduction of an intermediary, a ‘genetics broker’, between the individual and the police. Individuals present themselves to the broker and provide DNA samples after giving informed consent. The broker collects DNA samples to forensic standards and gives them to police. (My emphasis)

However, the DNA samples are not identified with client names, only with code numbers. The police do not know the identity of the individuals from whom samples were taken; only the broker can link the sample code numbers to the clients’ identities. After an agreed time period, the broker will destroy the link. As a result of their DNA testing, if the police wish to contact a client during the escrow period the broker will reveal the identity of the client to police. However, at the expiry of the escrow period, the broker breaks the identification link, and the police are left with a random sample of unidentified, and unidentifiable DNA. (My emphasis)

This simple scheme is sufficient to bring about all the desired outcomes from the perspective of the police. The police can still maintain their DNA bank for convicted felons, can still invite the public to submit specimens for analysis to investigate specific crimes, and can approach suspects on the basis of this DNA profiling and ask them to assist in further investigations.”

I have emphasised the sentences in Professor Burnett’s suggestion which in my opinion would make it problematic, from a civil liberties perspective, when only one or a small number of people need to be DNA tested. When samples from only a small number of suspects are needed, if the police are given these samples they will have reasonable knowledge of who they are from, especially if they need to contact a particular suspect.

Professor Burnett’s suggestion might be appropriate in situations such as Wee Waa, where many people in a population are tested. However, such a wide sample of DNA collection may be neither appropriate nor necessary for situations where a data bank of de-identified DNA already exists; and/or where there are already a number of prime suspects and DNA material from the crime scene.

The Honorary Directors of the Institute of Community Genetics, an organisation established to oversee the conduct of large-scale DNA testing in the population throughout Australia, have discussed the genetics broker concept outlined above with the Executive Officer of the Office of the Premier and with relevant key stakeholders, including the NSW Privacy Commissioner, the NSW Council for Civil Liberties, representatives of the NSW Police Forensic Services, the NSW Institute of Forensic Medicine, and the DNA testing laboratories of the NSW Health Division Laboratories.

Risk management, crime investigation and DNA

I suggest that a risk management approach to the collection and use of DNA during crime investigation might meet health, privacy and cost requirements more effectively than the method described above. Risk management is a logical and systematic method of identifying and controlling risks associated with any activity in order to continuously improve administration and outcomes. The risk management process is outlined in the Australian standard on Risk Management (AS/NZ4360: 1999).

In April 1999 Standards Australia held a workshop in Sydney to discuss implementation of this risk management standard with Australian and New Zealand health industry stakeholders and also with representatives of the National Health Service of Britain. The National Expert Advisory Group on Safety and Quality in Australian Health Care (1998) recommended that Health Ministers lead the way in promoting a safety and quality enhancement ethos throughout the whole health system. The risk management process is consistent with international standards to promote good management, such as the guidelines on quality management and environmental management (ISO 9004.1 and ISO 14004 respectively).

The steps in a risk management process should already be familiar to many health industry workers and police in Australia because of state OHS Acts which provide employers and workers with a duty of care. Employers must identify and control work related risks in consultation with workers who have been provided with information and training.

The practice of risk management is also consistent with the practice of health promotion. For example, the National Health and Medical Research Council (NHMRC) states that health promotion covers a great variety of activities with a primary focus on population health. It involves preventing the causes of determinants of illness; evidence-based practice; and community participation in decisions which affect health.

The development of crime prevention plans also needs to be coordinated in this context. The effectiveness of these relies in large part upon the provision of appropriate support programs and related evaluation and monitoring for:

  • low income/high risk communities
  • children at risk
  • victims of violence
  • perpetrators of crime

For example, the Crime prevention Division of the NSW Attorney General’s Department is currently coordinating development of a NSW juvenile crime prevention strategic plan under the oversight of a steering committee comprising a number of representatives of relevant government and non-government organisations. The Children and Young Persons (Care and Protection) Regulation 2000 has also recently been developed. It discusses: