AMA(SA) President discusses genetic test risk
Australian Doctor News
Q&A: Genetic tests pose discrimination risk, says AMA ethics chair
The organisation is updating its position statement, previously released seven years ago
3rd July 2019
Will I develop a hereditary condition? Are my partner and I related by blood? Why is my child experiencing problems with their health or development?
Dr Chris Moy.
It is increasingly easy for Australian patients to pay for genetic tests to find answers to questions like these, but the rise of accessible genomics raises ethical challenges for them and their doctors.
Adelaide GP Dr Chris Moy describes genetic testing as a “brave new world” for doctors that is quickly changing.
As more genetic and genomic services integrate into mainstream healthcare, he says there is an urgent need to grapple with the ethical challenges before they get too far ahead of doctors, the law and the community.
The AMA Ethics and Medico-Legal Committee is in the middle of its review of the AMA’s position statement on genetic testing from 2012.
Dr Moy, who chairs the committee, speaks with Australian Doctor about some of the ethical, legal and social challenges currently in discussion.
Australian Doctor: You describe this field as rapidly changing, will the position statement look very different to what was put out in 2012?
Dr Moy: It’s hard to know at this stage, because of the complexity of the issues. We are receiving quite a lot of feedback from specialists in genetic testing. We need to understand the actual area first and then start to look at the ethics of it.
What we are dealing with is fast-moving and complex, so the question is whether it is possible to get ahead of it to some degree by applying general principles.
What we would like to do is get as much information as possible to make sure we are over all the options from a technological point of view then deal with the ethical aspects from doctors facing these decisions.
The third layer is the community standard. We need to inform the community about what the issues are because, to a degree, a lot of these questions are not just about what doctors feel is right; it’s actually what the community decides is reasonable when it comes to things like privacy, responsibility to pass on information and insurance eligibility.
AD: What are some of the major issues dominating your discussions?
Dr Moy: One of the big questions is what constitutes genetic discrimination, where an individual is treated unjustly or unfairly because of their perceived genetic status.
The area that people have heard about recently is an insurance firm having access to a genetic test and then either failing to insure that individual or placing an extremely prohibitive loading to obtain insurance.
If the community decides that having a positive genetic test is no different to having another diagnosis on your past medical history list and that you therefore have a duty to disclose it to an insurer, that may actually be prohibitive and prevent people from having the tests.
The flipside of that is if we say that insurers are not able to either access or even take into account genetic testing, then we may have insurance that becomes prohibitive generally, with a rise in cost.
There are certainly many protections in place at the moment. The Financial Services Council enacted a moratorium, where individuals will be able to access up to $500,000 worth of life insurance without having to disclose an adverse genetic test result.
The moratorium will be in place from 1 July until at least 2024. But that’s just buying time for a limited sector at this stage, and it might not cover other forms of insurance.
There needs to be some wider consideration by an informed community in respect to determining what is reasonable. That’s a community decision, not a medical decision