Government considers regulation overhaul in genetic testing amid discrimination concerns

MedTech & Diagnostics News: In a move aimed at addressing growing concerns of genetic testing discrimination within the life insurance industry, the Albanese government has initiated a consultation process to consider measures to reshape regulations around the use of genetic test results.

Under the current Disability Discrimination Act, life insurers have an exemption allowing the utilisation of genomic or genetic test outcomes in the underwriting of life insurance contracts. However, since 2019, an industry-regulated partial moratorium has been in place, restricting the use of these tests under certain financial thresholds.

Recognising the apprehensions prevalent in the community, where individuals are deterred from undergoing genetic testing due to fears of discrimination in obtaining life insurance, the government is taking a proactive stance. This move comes in the wake of the Monash University report, A-GLIMMER, which highlighted several concerns regarding the existing moratorium and urged government intervention.

Dr Mike Freelander MP, Federal Member for Macarthur and Chair of the Standing Committee on Health, Aged Care, and Sport, emphasised the dichotomy of genetic testing’s potential. He said, “Genetic testing provides lifesaving information. It can also provide life-altering information to groups such as insurers and employers that can be used against individuals and their families, which can impede not only their recovery and the healing process but also their financial wellbeing and even their employment wellbeing.”

Expressing concern over the unjust exploitation of genetic testing results, Dr Freelander added, “Insurers can increase premium costs if people are now recognised as having certain genetic conditions, and they’re expanding all the time. We’re now recognising genetic conditions for sudden death, cardiovascular disease and dementia. We know that these can be used by insurance companies, employers and educators to restrict people’s access to employment, benefits and financial success. It’s an unfair and an ugly use of genetic testing, and this must be stopped. We should not allow genetic testing results to be used by insurance companies, employers and a whole range of people to discriminate against individuals and their families.”

Assistant Treasurer and Minister for Financial Services, Stephen Jones, echoed these sentiments, stating, “Australians should not be dissuaded from potentially life-saving genetic testing, out of fear of discrimination in life insurance products. So many people across academia, industry, and the parliament have worked to bring attention to this issue, and we absolutely need to look into it.”

The consultation paper aims to explore options to regulate the use of genetic testing results in life insurance underwriting. This initiative has received widespread support from various quarters.

Krystal Barter, Founder of Humanise Health, hailed the government’s move as a crucial step forward. She said “It’s time to get behind this critical consultation and participate in securing a life insurance approach in line with other countries. This is a critical moment for people considering genetic testing now and for generations to come.”

Hon Josh Burns MP stressed the importance of such measures for specific communities. He said “Strong protections against discrimination on the basis of genetic results will give my community greater confidence in getting genetic testing and the healthcare they need.”

The options outlined in the consultation paper are geared towards ensuring continued access to affordable life insurance while maximising the health benefits provided by genetic testing.

The consultation process invites submissions from the public, industry experts, and stakeholders, aiming to gather diverse perspectives. Submissions will close on 31 January 2024, and the insights garnered will play a pivotal role in shaping future policies concerning genetic testing and life insurance.

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