NSW Genetic Health Guidelines - Appendix 3: Further information

What is the role of the IPC?

The Information and Privacy Commission (IPC) is an independent statutory authority that administers New South Wales’ legislation dealing with privacy and access to government information. The NSW Privacy Commissioner is responsible for resolving complaints, protecting and enhancing the privacy rights of the NSW community and ensuring that privacy principles in the PPIP Act and HRIP Act. More detailed information is available at www.ipc.nsw.gov.au.

Who do these Guidelines apply to?

These Guidelines apply to all organisations that are a health service provider or that collects, holds or uses genetic information. This includes NSW public sector agencies, including public health organisations, and private sector persons, eg. medical specialists and general practitioners.

Do these Guidelines apply to research settings?

These Guidelines do not apply to research settings.

What happens if the patient with the genetic disorder is deceased?

Currently the HRIP Act applies to personal information about an individual who has been dead for less than 30 years. Genetic information about a deceased person may be subject to legal duties of confidentiality. As well, information about a deceased person may have implications for the confidentiality and privacy of living genetic relatives and advice from a medical defence organisation should therefore be obtained.

Where can further advice on providing information and support to patients be obtained?

The NHMRC guidelines on communicating with and providing information to patients (NHMRC 2004a; 2004b) are available at http://www.nhmrc.gov.au.

Where can further advice on genetics and genetic conditions be obtained?

The Centre for Genetics Education NSW Health provides fact sheets, resources and information for health professionals and their patients including contact details for genetics services and support groups across Australia and New Zealand. The resources are available at www.genetics.edu.au.

EviQ, the NSW Cancer Institute’s online resource provides health professionals with current, evidence based, point of care Cancer Genetics information. The information is available at www.eviq.org.au.

Where can legal advice be obtained by health practitioners?

Healthcare indemnity providers are generally available to provide medico-legal advice to members on a 24-hour 7-day basis.

Where can further advice on cultural issues be obtained?

The NHMRC publications Cultural Competency in Health: a Guide for Policy, Partnerships and Participation, Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research and Keeping Research on Track: a guide for Aboriginal and Torres Strait Islander peoples about health research ethics  provide advice on cultural competency in health organisations. The guides are available at www.nhmrc.gov.au.

What happens if a patient is unhappy with the medical practitioner's decision to use or disclose their genetic information without consent?

If an individual thinks an organisation has interfered with their privacy, the individual can:

1. Request an internal review if the complaint is against a NSW public sector agency. If the complainant is dissatisfied with the outcome of the internal review (or it is not completed in 60 days) they have 28 days to apply to the NSW Civil and Administrative Tribunal (NCAT) for a review of the NSW public sector agency’s decision and seek an enforceable decision.
2. Lodge a complaint with the NSW Privacy Commissioner if the complaint is against a private sector provider. 

   If the NSW Privacy Commissioner thinks it is appropriate, and if both parties agree, the NSW Privacy Commissioner will endeavour to resolve the matter by conciliation. Choosing conciliation as the option for a complaint means the matter ends with the conciliation process (ie. no further appeal mechanisms is available).

   Alternatively, the NSW Privacy Commissioner may investigate the matter further and issue a non-binding written report to both parties, stating the NSW Privacy Commissioner’s findings or recommendations. If the individual is still not satisfied with the process, they can request the NSW Civil and Administrative Tribunal (NCAT) to conduct a review of their complaint within 28 days of receiving the report of the NSW Privacy Commissioner (or a later date if the NSW Privacy Commissioner’s report sets a later date). 

Further information on the Information and Privacy Commission’s complaint handling process is available on the IPC website here.