A genomic test result can:
Before having a genomic test it is important to understand the possible issues that testing may raise. These include:
The impact of testing on blood relatives. An unexpected result. Unexpected family relationships. An impact on your ability to get some types of insurance.
Getting tested can affect your family members who share your genetics (known as your blood relatives). Your blood relatives include anyone related to you by genetics. This could be your ancestors, immediate family, or even future generations. The results of your test may reveal information about your blood relatives’ health because you share genetic information with them. This can cause some people to worry.
Genetic or genomic testing might reveal unexpected family connections, like finding out your parent isn’t your genetic parent. This doesn’t happen often, but it’s possible. If you’re concerned this could apply to your family, consider talking to your healthcare provider for guidance.
Sometimes, having a genomic test may impact how easy or costly it is for you to get some types of insurance, such as income protection, life or travel insurance. This might also affect your blood relatives in certain situations.
If you would like to change your mind about having testing, talk to your health professional.
If testing has not started, you can decide not to go ahead with it (withdraw your consent). If testing has already begun, you can change your mind and choose not to be told the results of the test. However, the report might still be kept in your medical records, depending on when you make this decision.
Sometimes the laboratory will have already started analysing the DNA sample. If you decide not to know the results at this point, the laboratory’s findings will be recorded in their system but not shared with you. If the laboratory has generated a report with their findings (your results) and it has been entered into your medical record, the report cannot be removed. However, you can ask your health professional not to share these results with you. This will not impact your relationship with your health professional.
Sharing your genetic and health information can help doctors learn more about medical conditions, which could improve the chance of a diagnosis for you or others. This includes sharing test results and medical information with large secure databases.
When experts compare your results with others in similar situations, it may help them understand your condition better.
When data are shared there are measures in place to help protect your privacy, such as:
There is a very small chance that you or your child might be identified through your data. One way this could happen is if someone has your genomic data and matches it with information in the database.
Your healthcare team might order further testing or share your genomic data with other health professionals to try and understand your results better. The results, genomic data and identifiable sample will not be used or disclosed outside of your or your child’s care without your consent, unless required or allowed by law.
Your test results could also help your blood relatives with their health care. Usually, name and address will be removed before your results are shared. Sometimes, this information may be needed to help with your relatives’ care (for example, to make sure relationship and diagnosis details are accurate). This sharing will only happen with your permission. Your results will not be given directly to your blood relatives but will be shared with health professionals providing their care.
You might consider sharing the data from your genomic test with researchers. This is your decision, and whatever you choose will not impact the care you get from your health professional.Sharing your data can help researchers and doctors learn more about the differences in people’s genomes. This can help you and others.
Please let your health professional know if you would prefer to talk about research later, instead of in your first appointment.
You can agree to share your data for research investigating the same or a related health condition. Usually, your name will be replaced with a unique code, so your samples are not identifiable. It is unlikely that you will receive any personal results from sharing your data for research. The results from most research projects do not influence an individual’s medical care, so the research findings are not returned to participants.
But in rare cases, there could be research discoveries relevant to your medical care. The researcher will communicate with your health professional, who will then share these findings with you. Your personal details will not be shared with researchers without your permission.
All researchers are bound by the law and ethical guidelines. They can only conduct research for projects approved by a Human Research Ethics Committee. You might be contacted later to join other research projects. It is your decision to participate in future research projects.
Research might not help you directly, but your data could help others. By comparing patient data, scientists can understand the human body better through genetics and find ways to prevent and treat genetic conditions.
In the spirit of reconciliation Australian Genomics acknowledges the Traditional Custodians of country throughout Australia and their connections to land, sea and community. We pay our respect to their elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples today.
Health insurance: In Australia, genetic and genomic testing will not stop you from getting health insurance or impact how much you will pay for your health insurance. However, a diagnosis of a condition means that health insurance companies may apply waiting periods for treatment of the condition.
Income protection, life insurance or travel insurance: Your genomic test results won’t affect your existing insurance coverage. However, if you already have symptoms of a genetic condition or it runs in your family, it might be harder or more expensive to get new income protection, life or travel insurance.
According to current industry rules, Australians can usually buy new life insurance policies or increase their coverage (up to certain financial limits) without their previous genomic test results being considered. But if you want coverage beyond these limits, you may be required to share genomic test results that show an increased risk.
Insurance industry regulation means that insurers are not allowed to ask your blood relatives for your genetic test results and cannot ask you to have testing.
Your health professional won’t share your results with an insurance company without your permission.
For more information on insurance, you can click the links below:
It can be confusing to understand how genetic and genomic testing can impact insurance. If you’re unsure or have questions, you can talk to your health professional.
