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Public consultation: DNA testing legislation
Predicting disease risk through DNA testing holds the promise of life-saving outcomes for some. With advancements in technology and the lowering costs of DNA testing, this type of screening may become widely available to the Australian society.
Inflammatory Bowel Disease (IBD), which includes Crohn’s disease and ulcerative colitis, has a genetic component that has been well established by research. Over 200 risk genes have been identified through genome-wide association studies. These genetic factors interact with environmental and immune system factors to contribute to the development of IBD. Moreover, the genetic differences add to the complexity and diversity of the disease, implying that various patients may exhibit distinct genetic characteristics that impact their symptoms and disease progression. Thus, DNA testing can assist not only in detecting risks but also in targeted, patient-centred treatment.
DNA testing in Australia is subject to a range of regulatory concerns, primarily orbiting around ethical, privacy, and discrimination-related issues such as:
- Privacy: Concerns about the collection, storage, and sharing of genetic information.
- Consent and Counselling: Ensuring informed consent and appropriate counselling.
- Discrimination: Risks of genetic information being used to discriminate, especially in employment and insurance.
- Ethical Issues: The right not to know one’s genetic information and potential stigmatization.
- Regulatory Framework: Involving various laws and guidelines.
- Direct-to-Consumer Testing: Challenges in ensuring test accuracy and consumer information.
The Australian government is working on implementing a total ban on the use of adverse genetic test results in life insurance underwriting (for instance, Canada introduced such ban in 2017). This legislation aims to ensure that Australians can undergo genetic testing without fear of discrimination when it comes to life insurance. The government has launched a consultation to gather feedback on the legislative design and technical details of the ban. This includes defining what constitutes a genetic test, how the ban will be enforced, and how it will be implemented. You can access the consultations document here:
Crohn’s & Colitis Australia (CCA), as the national peak body representing people affected by IBD across Australia, would like to ensure that your voice is part of the consultations. we would like to collect your opinions, ideas, and concerns regarding the design and implementation of DNA testing legislation and pass them on to government.
The consultation document can be found here:
Please submit your comments by 05/03/2025:
