Purpose and Disclosure
Your information is collected for the primary purpose of providing you, your referring doctor and other medical professionals involved with your care with specialist advice about genes, genetic testing, and the diagnosis and treatment of genetic disorders. Like all medical information it is treated as strictly confidential, but to provide this service some identifying information may need to be disclosed to other parties such as your referring doctor, pathology providers, or Medicare Australia.
Information collected may also be used for the purpose of audit, research, teaching, and risk management but any information disclosed for these purposes is usually done in a way that maintains patient anonymity.
Information will not be disclosed if requested by other third parties such as solicitors, law enforcement agencies, insurers, employers, government or financial organisations, unless this request is authorised by a court of law, or you have given specific permission.
Protection and Retention
Australia has laws which help protect your privacy, such as the Commonwealth Government Privacy Amendment (Private Sector) Act 2000. This Act established ten National Privacy Principles that broadly address the way information is collected, used and disclosed by many organisations, including private health practitioners.
Your information is stored in both hard copy and electronic form on the business premises of Brisbane Genetics. The protection in place includes procedures to back up the electronic data, network protection by firewall (both hardware and software), anti-virus software, and password protected access for authorised users of the patient management software. The hard copy records will be destroyed as storage space is used up, but the electronic record will be retained as long as Brisbane Genetics continues to exist.
Ethical Considerations
The nature of genetic information is such that it is shared biological information, especially with close family members. Usually, but with some important exceptions, the social relationships between these same people is also close. Genetic test results and advice is thus shared in the course of the normal social interactions in a family. Exceptions to this norm are best discussed in each individual circumstance.
Medical Practitioners have a long tradition and strong ethic of respecting patient confidentiality and autonomy. These traditions are all the more important with genetic information. Rarely this ethical obligation of confidentiality can be outweighed if foreseeable harm to another family member might be prevented by the disclosure of important information to the individual concerned or their medical carer.
Review and Update
You are welcome to review your personal information we have on file. Please let us know of any changes so that this information is accurate, complete and up to date as needed.
If you have any concerns about the privacy of your information please feel free to raise these with Dr Michael Gattas during your consultation.
Last updated November 2017