THE self-regulated moratorium restricting the use of genetic test results in life insurance underwriting comes up for review in 2022 and a new research project has been initiated to ensure the review gets independent and adequate evidence.
Writing in the Medical Journal of Australia today, public health genomics experts said the project – Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response (A-GLIMMER) – brings together leading researchers, clinicians, patient groups, and policy experts in Australia to answer the question of whether the Financial Services Council (FSC) moratorium is “an adequate and effective long term regulatory solution for Australia”.
“In July 2019, following Parliamentary Joint Committee recommendations, the insurance industry voluntarily introduced a moratorium restricting the use of genetic test results in life insurance underwriting for polices worth up to AU$500 000,” wrote the authors, led by Jane Tiller, Ethical, Legal and Social Adviser in Public Health Genomics at Monash University.
“Although the moratorium is an important step, concerns remain around the financial limits, public awareness, lack of government oversight and compliance monitoring.
“Although health insurance is community-rated in Australia and therefore not subject to genetic discrimination, the use of genetic test results in life insurance is allowed under the Disability Discrimination Act 1992 (Cth).
“This means that life insurance companies can legally refuse coverage or increase premiums based on genetic test results.
“Previous studies show that fear of insurance discrimination deters individuals from taking clinically indicated genetic tests and participating in genetic research,” Tiller and colleagues wrote.
“Genomic test results can not only reveal risk (positive results), but also indicate reduced risk (negative results), potentially changing the dynamics of actuarial calculations.
“It is critical for the optimisation of genomic medicine that individuals can make informed choices about genetic testing and research participation without fear of insurance implications.
“Further, moral implications regarding the use of genetic information for insurance underwriting extend beyond actuarial fairness to include consideration of public interests such as justice, beneficence, autonomy and public health.
“Several governments internationally have therefore banned or restricted the use of genetic test results in risk-rated insurance, including Canada, the United Kingdom and Europe, using various legal mechanisms.”
Tiller and colleagues said that A-GLIMMER’s overarching aim was to ensure sufficient evidence was collected in the coming years to inform government and the 2022 FSC review, to help determine the effectiveness of the FSC moratorium.
“Achieving an adequate policy solution to this issue in Australia is essential for ensuring optimal integration of genomics into Australian health care, engendering public trust and consumer participation in genomics, and paving the way to realise the many benefits of genomic medicine for Australia,” they concluded.
- Cate Swannell