Dr Suelette Dreyfus is an expert on whistleblowing and technology, data retention, privacy and national security.
Lead author Dr Louise Keogh from the School of Population and Global Health at the University of Melbourne said “This case presents evidence that life-insurance companies have made incorrect risk-assessment judgments based on genetic information.”
“In addition, we have previously found that the fear of such discrimination can act as a deterrent to genetic testing.”
Published in the Medical Journal of Australia (MJA) today, the authors are calling on a more collaborative approach between industry, government and researchers to address these issues.
The case study published revealed that James (pseudonym) in his early 20s, was denied full life insurance cover because he revealed that he had discussed genetic testing with a genetic counsellor.
He was later tested and found to carry a mutation in the MSH6 gene; after disclosing this, he was denied cover for cancer by two other life insurance companies.
Unsatisfied with the insurance companies’ risk assessments, and based on his understanding that regular colonoscopy screening significantly reduced his risk of cancer, James made a complaint to the Australian Human Rights Commission.
Dr Louise Keogh said, “After informing the third insurance company that he had done so, he was offered full coverage, which suggests that the company did not have actuarial data to justify its decision.”
Professor Margaret Otlowski from the University of Tasmania said “This case provides evidence of the high level of initiative and proactivity required for a consumer to achieve a fair result. Few Australians would be in a position to pursue the level of research and advocacy undertaken by James (a professional with scientific training).”
“It demonstrates the need for further conversation and action on the use of genetic test results by life insurance companies.”