Safeguarding Australia’s Genomic Future: The real problem of genetic discrimination

Equitable access to DNA screening for preventable disease is the mission of DNA Screen, a world-first Monash University pilot screening program. However, several ethical, legal and social issues impede the implementation of DNA screening in Australia. One of those issues is the very real problem of genetic discrimination.

Dr. Jane Tiller is co-lead of the DNA Screen study and leads the Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response (A-GLIMMER) project.

Genetic discrimination in Australian life insurance is alive and well, legally protected by a special exemption under Australia’s national discrimination legislation. Fears of suffering discrimination and financial disadvantage deter people from having life-saving genetic testing or being involved in crucial genomic research. Dr Tiller’s research indicates that an industry self-regulated, partial moratorium introduced by the life insurance industry in 2019 has failed to address the issue of discrimination or the deterrent effect on Australian consumers.

There is no government oversight of life insurers’ use of genetic test results. The A-GLIMMER study assessed the impact and effectiveness of the moratorium from the perspective of stakeholders (consumers, healthcare providers, researchers and the financial services industry). It found that overwhelmingly, Australian stakeholders believe that the moratorium is inadequate to protect consumers from genetic discrimination, and that the Australian government should implement legislation on this issue.

The final stakeholder report of the project (due 30 June 2023) will make recommendations for legislative change to protect Australians from genetic discrimination.

Genetic technology is transforming health care. Precision medicine relies on genomic testing to personalise therapeutic treatments. Genomic research is also critical to understanding disease, improving diagnostic methods and guiding the selection of the most effective drugs for treatment.

To maximise its potential and ensure public trust in genomics, it seems clear more must be done to prevent genetic discrimination and ensure all Australians — particularly those most at risk from genetic conditions — can benefit from the genomics revolution.

Dr. Jane Tiller is a lawyer, genetic counsellor and public health researcher. She has a background in corporate law and a keen interest in the regulatory and ethical aspects of genomics. Jane is the Ethical, Legal and Social Adviser in Public Health Genomics at Monash University, and Senior Project Coordinator at Australian Genomics.

This will be a fascinating discussion for members, potential members and guests about cutting-edge medical research.