Monday, 9 April 2018

Win for medical research involving genetic testing

Dr Paul Lacaze and Ms Jane Tiller
Head of Public Health Genomics, Dr Paul Lacaze, and Ethical, Legal and Social Adviser, Jane Tiller, have again been in the media again following the final report release from the Parliamentary Inquiry on Life Insurance. The pair have worked tirelessly and successfully to draw attention to the issue of genetic testing and life insurance.  Paul appeared on ABC TV over the weekend, and the two recently co-authored an article in The Conversation which is being devoured by readers and is generating intense debate.

Australian Life Insurers will be prohibited from using predictive genetic test results, other than where consumers willingly provide negative test results indicating reduced risk, if the Inquiry’s full recommendations are adopted. The recommendations would bring Australia into line with the United Kingdom and most other developed nations, yet still require implementation by the government.

Dr Lacaze and Ms Tiller presented to the inquiry in May 2017, highlighting a lack of transparency and consumer protection in Australia with regards to the use of genetic test results by life insurers. This has been made possible by the current status-quo of industry self-regulation through the Financial Services council.  The Inquiry’s recommendations reflect concerns among many in the genetics community that people are being deterred from potentially life-saving tests due to insurance fears, or deciding not to participate in medical research at a time in genomics when it is needed most. 

The practice is a growing concern for Australia, especially amidst a rumoured upcoming National genomics and precision health mission, aiming to enable mainstreaming of genomic testing into healthcare and clinical trials. Dr Lacaze and Ms Tiller argue the current lack of regulation around the use of genetic results in life insurance represents a significant barrier and impediment to progress, which must be removed. 

From an ethical perspective, some people with inherited cancer mutations who have taken drastic and proactive steps to reduce their overall risk of cancer to below that of the general population, such as risk-reducing surgery and intensive surveillance, are still being denied life insurance coverage.

Jane and Paul’s piece in The Conversation focusses on five questions you should ask prior to paying for personal online DNA testing, a booming industry. Lack of regulation has led to some companies making fanciful claims about what predictions genetic testing can make. The article cautions consumers against taking all the hype at face value; encourages them to plan and seek help in interpreting results; consider insurance ramifications; and to investigate what personal genetic information testing companies claim ownership over, and how they use it, to find a company individuals are comfortable with.