Reviewing genetic and genomic testing policy
BY DR CHRIS MOY, CHAIR, AMA ETHICS AND MEDICO-LEGAL COMMITTEE
As we review the AMA’s Position Statement on Genetic Testing 2012, it is evident that every doctor, regardless of area of practice, must now have a practical knowledge of human genetics and relevant testing in a variety of clinical settings. With the rapidly expanding integration of genetic and genomic services into mainstream health care, we will continue to advocate for a sufficient workforce to meet the demands and expectations of the community. This requires appropriate education and training, workforce planning, investment and infrastructure to ensure that everyone has equitable and efficient access to safe, evidence-based genetic and genomic testing, relevant health care professionals, pathology services, specialist genetic services and counselling services throughout the country.
Our policy must also be responsive to the ongoing ethical, legal and social challenges associated with genetic and genomic testing such as the exponential rise and influence of direct-to-consumer genetic testing and the right to protection of genetic information.
A significant issue recently discussed by the AMA’s Ethics and Medico-Legal Committee (EMLC), the relevant committee coordinating the policy review, is genetic discrimination. Genetic discrimination is where an individual is treated unjustly or unfairly because of their actual or perceived genetic status. The fear of genetic discrimination can be a deterrent for many people who would otherwise benefit from genetic or genomic testing. A common example of this relates to the life insurance industry.
Until recently, a person applying for life insurance in Australia had to reveal any known genetic test results which could then be used to assess their insurance eligibility. While some may argue that insurers using genetic or genomic test results is no different to using family history, the fear that a positive genetic test would be used by the life insurance industry to deny an individual insurance (or subject them to higher premiums) is a known deterrent for many who would otherwise benefit from testing.[i]
While genetic and genomic testing is a relatively new technology, it is imperative that we remove these sorts of barriers and disincentives that undermine community confidence in the system in order to realise the benefits such testing provides. In response to community concern, the Financial Services Council recently enacted a moratorium on life insurance genetic tests. As of July 1, Australians will be able to obtain up to $500,000 worth of life insurance without having to disclose an adverse genetic test result. While some may argue this does not go far enough, it is a step in the right direction. The moratorium is due for review in 2022 and will be in place until at least 30 June 2024.[ii],[iii]
But as genetic and genomic testing becomes more mainstream, we need to consider whether there will come a point where genetic information should be treated the same as other medical information or should it always be afforded a degree of ‘special protection’? This will be an ongoing discussion and, as with many social issues, community and professional attitudes to the protection of genetic information will likely shift over time and it will be essential that the relevant ethical, legal and regulatory frameworks reflect and support this.
These and other issues relevant to genetic and genomic testing will be considered by the EMLC as we undertake the review of the policy. The current Position Statement on Genetic Testing 2012 is available on the AMA website at https://ama.com.au/position-statement/genetic-testing-2012. If members would like to provide their views on revising the statement, please send them to firstname.lastname@example.org
[i] Louise A Keogh and Margaret F A Otlowski. Life insurance and genetic test results: a mutation carrier's fight to achieve full cover. Med J Aust 2013; 199 (5): 363-366.
[ii] Financial Services Council. Media Release. FSC Announces Moratorium on Genetic Tests for Life Insurance to Start in July 2019. 30 October 2018.
[iii] Financial Services Council. Media Release. Update on Genetic Testing Moratorium and Life Code Review. 15 March 2019.
Published: 13 Jun 2019