Exceptions may arise where the health of others is at risk or you are required by order of a court to breach patient confidentiality. This is clearly a very general statement and to be of much practical assistance the code of ethics really needs to be supplemented with a clear set of guidelines on what circumstances would justify making disclosures without the patient's consent and what safeguards should be applied to such disclosures. On the other hand, it leaves the privacy rights of the test subject undefined and relies for its efficacy on the judgement of individual doctors. Genetic registers Genetic registers are aggregations of the most sensitive type of personal genetic information. They are used by clinicians to trace heritable health conditions from generation to generation of the one family.
People often supply information on other family members without their consent.
Registers may also contain blood and tissue samples. But these hardly afford adequate protection for the privacy of the personal genetic information involved. They are not enforceable. The Anti-Cancer Council of Victoria is currently working on guidelines for the Familial Adenomatous Polyposis Register, which will address a range of ethical questions, including questions of personal information privacy. Hopefully this work may result in better guidelines for the handling of information on genetic registers generally.