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Genetic Testing in Insurance Underwriting

Disability Rights



Learn more about the human rights risks associated with the use of genetic testing results in life insurance underwriting.

The Australian Human Rights Commission (Commission) has provided a submission to the Australian Government Treasury (Treasury) Consultation Paper on the use of genetic testing results in life insurance underwriting. 

Evolving regulatory environment 

It is vital that the regulatory environment evolves with ongoing advances in medical/health technology and genetic research by protecting human rights and preventing discrimination and unethical practices. 

Laws and regulations must continue to meet community expectations and maintain public trust in relation to the use of information. The issue is likely to impact a large proportion of the population into the future, as genetic technology develops and becomes more readily available as both a diagnostic and preventative health tool. 

International human rights

Australia has ratified a range of international human rights instruments that set out clear rights and obligations relating to people with disability, most notably the Convention on the Rights of Persons with Disabilities (CRPD). 

Australia is also a signatory to the International Covenant on Civil and Political Rights (ICCPR) and the International Covenant on Economic, Social and Cultural Rights (ICESCR).

When considering genetic testing, it is important that human rights are considered. It is especially important that regard be had for the right to non-discrimination under article 5 CRPD, right to privacy under article 17 ICCPR and the right to health under article 25 CRPD.

Human rights model of disability

The CRPD represents a fundamental shift in how disability should be viewed and understood, applying universal human rights principles to State obligations to respect, protect and fulfil the specific rights of people with disability. 

A human rights model recognises people with disability as rights-holders who can and should determine the course of their lives to the same extent as any member of society, rather than being seen or treated as ‘objects’ of charity, medical treatment and 
social protection.

Preventing people with disability, or those with a known genetic predisposition to disability or illness, from accessing life insurance on an equal basis as others perpetuates the medicalised view that disability is ‘abnormal’ and that the lives of people with disability are less valuable.

The Commission encourages insurers to move away from a deficit view of disability based on cost or risk assumptions, and instead to view disability through the lens of a human rights model and as a measure of diversity.

Right to privacy

How genetic information is handled by insurers is incredibly important as it contains information that is unique to individuals and fundamentally private. 

The Privacy Act 1988 (Cth) is the principal piece of legislation protecting the human right to privacy in Australia. The Privacy Act is currently being modernised with regard for biometric information, with proposed changes having been ‘agreed to' or ‘agreed in-principle’ by the Australian Government in September 2023.

The Commission welcomes the progress that is being made towards comprehensive reform in this area, however until reforms are enacted it creates difficulties for many industries, including insurance organisations, as there will continue to be uncertainty about their obligations when collecting and handling sensitive information (such as genetic information).


The Commission’s submission makes give important recommendations in respect of genetic testing and insurance underwriting. A key recommendation is that the Australian Government should legislate a prohibition on the use of adverse genetic test results by life insurers, and other types of risk-rated insurance. To learn more about these recommendations, please read the submission.