Are consent and privacy issues in genetics any different to other areas of medical practice?
One way in which genetics differs to other areas of medical practice is because you share your DNA with your genetic relatives. Consequently, your genetic information may also reveal information about your relatives and can have implications for other family members.
For example, if you have inherited a faulty gene, there is a chance you can pass it on to your children. It may also be present in other relatives (e.g. brothers, sisters and cousins). Being told that you have a genetic disease is very important for you as the affected person. However, your genetic testing result is also very important for your genetic relatives because they may also be at risk.
What should I do if I find out information that might also affect my family members?
Your doctor can advise you if your genetic testing information may have implications for your family.
If you are diagnosed with a genetic disease, or as having an increased risk of developing a disease, your doctor will recommend that you tell your relatives so they can take action to reduce the risk, severity or impact of the disease to themselves and their families.
Most people choose to inform their relatives of relevant genetic testing information. You have the option of disclosing this information yourself, or ask that your doctor contact your relatives on your behalf.
What if I do not want to disclose my genetic results?
Sometimes passing on this information is not so simple. You may not feel comfortable telling your relatives about your illness or that they may be at risk of developing the same disease.
In such cases, privacy laws may allow doctors and heath service providers to inform genetic relatives that there is a genetic condition in the family without the patient’s consent for this disclosure.
This can only happen if the particular disease poses a serious threat to a relative and knowledge of this information will be effective and necessary to lessen or prevent harm. During this disclosure, the affected relative(s) would not be told what the genetic disease is or who in the family was found to have the disease. They would be advised to seek advice from a doctor.
At present, the law applies only to the heath service providers working in the private healthcare setting.
What if I am unhappy about the decision to disclose my information without my consent?
If you think a health service provider has violated your right to privacy, you should first try to resolve the issue with them. If you cannot resolve the complaint with your doctor or health care provider, you can make a complaint to the Office of the Australian Information Commissioner. Further information is available on the Office of the Australian Information Commissioner's privacy complaints page.
The 2003 Australian Law Reform Commission and Australian Health Ethics Committee report into genetic privacy issues, Essentially Yours: The Protection of Human Genetic Information in Australia, discusses various issues related to consent and privacy.
A recommendation from this inquiry was that it should be illegal to undertake DNA testing, including paternity testing, without proper consent unless directed to by a court.