During 2016-18 the Australian Joint Parliamentary Committee on Corporations and Financial Services held an Inquiry into the Life Insurance Industry. Australian Genomics has an interest in the inquiry outcomes relating to the life insurance industry’s use of genetic information and its access to medical information.
As a national research collaboration, funded to develop strategies to integrate genomic medicine into the Australian health care system, Australian Genomics is keen to see a policy and regulatory environment in Australia that promotes patient confidence in accessing genetic and genomic testing, whether it be through clinical care or as a participant in medical research.
Following 77 submissions and 7 hearings, the Joint Parliamentary Committee handed down its report and recommendations on the 27th March 2018. These recommendations focus on areas where substantial changes are required to ensure the life insurance industry is held to account in relation to:
- effective consumer protections and industry codes of practice;
- the transparency of remuneration, commissions, payments and fees;
- the provision of advice in the best interests of consumers;
- group life insurance arrangements that do not disadvantage certain groups of consumers;
- appropriate access to personal medical and genetic information; and
- fair claims handling practices.
Privacy and genetic discrimination
In relation to the use of genetic information, the Committee noted that concerns have been raised around privacy and genetic discrimination. One group to raise such concerns has been the Australian Genetic Non-Discrimination Working Group (AGNDWG) which formed to explore issues around third party uses of genetic information, including by the insurance industry. This independent group is comprised of genetic and medical professionals, research scientists, lawyers, genetic counsellors, law and bioethics academics, policy experts, social scientists and a senior actuary with experience in the area. This group has been advocating for a review of the use of genetic test result information by the life insurance industry.
The Joint Parliamentary Committee made a number of statements in the report regarding the need for a ban on the use of genetic test results for life insurance. During its deliberations the Committee reviewed approaches in other countries including some which have enacted legislation or voluntary agreements to restrict or ban the use of genetic information by insurance companies. The Committee stated that, in their view, it is unfair to limit or deny a person access to life insurance products based on factors that are out of their control. The Committee also expressed their concern that the use of genetic information by insurers has impacted the public’s willingness to participate in research.
The Committee made the following recommendations in relation to genetic information:
9.1 – The Committee recommends that the Financial Services Council, in consultation with the Australian Genetic Non-Discrimination Working Group, assess the consumer impact of imposing a moratorium on life insurers using predictive genetic information, unless the consumer provides genetic information to a life insurer to demonstrate that they are not at risk of developing a disease.
9.2 – The Committee recommends that the Financial Services Council make any updates as necessary to Standard 16—Family History and the Life Insurance Code of Practice to support the recommended changes to Standard 11—Genetic Testing Policy as outlined in Recommendation 9.1.
9.3 – The Committee recommends that life insurers be banned from using predictive genetic information while the Financial Services Council is updating Standard 11—Genetic Testing Policy, Standard 16—Family History, and the Life Insurance Code of Practice to align with Recommendation 9.1.
9.4 – The Committee recommends that if the Financial Services Council and life insurers have adopted a moratorium on the use of predictive genetic information as outlined in Recommendation 9.1, the Australian Government should continue to monitor developments in genetics and predictive genetic testing to determine whether legislation or another form of regulation banning or limiting the use of predictive genetic information by the life insurance industry is required.
Access to medical information
The Committee also made a number of recommendations in relation to insurance companies access to medical information. It was noted that life insurers request authorisation to access a consumer’s medical information at the time of an application for an insurance policy and when making a claim. The Committee recommended that the Financial Services Council and the Royal Australian College of General Practitioners collaborate to prepare and implement agreed protocols and standards for:
- requesting and providing relevant medical information only — not complete medical files;
- uniform authorisation forms for access to medical information;
- appropriate storage of medical information; and
- real-time disclosure to consumers about the progress of their claim, including requests for medical records.
To read the Committee’s views and recommendations on access to medical records (Chapter 8) and use of genetic information (Chapter 9), visit the Inquiry website here.
Ainsley Newson: firstname.lastname@example.org
Andrea Belcher: email@example.com
Australian Genetics Non-Discrimination Working Group
Jane Tiller: firstname.lastname@example.org.