Governments around the world, including in Australia, are currently grappling with how to subsidise gene therapies, which have clinical potential but can cost as much as $1 million per treatment. This presentation reports on how the ethical dimensions of such decisions have been studied and discussed in ethics, social sciences, health humanities, and health technology assessment journals.
Many genetic conditions are rare, making it difficult to conduct randomised controlled trials to assess long-term effectiveness. Nonetheless, there is strong industry, clinician and patient support for making even unproven treatments available. When arguing for subsidisation, these groups invoke values beyond effectiveness, such as hope and technological innovation. These values (which are sometimes represented as a flower with a growing number of petals) cannot easily be disputed. But their proliferation makes it impossible to refuse therapies, which is clearly unsustainable.
It is crucial, therefore, to find ways of distinguishing more or less justifiable value claims, and more sophisticated ways of integrating values into resource allocation decisions. To begin this process, we need to know how values are invoked and by whom. We therefore conducted a pragmatic narrative review of relevant academic literatures.
Our research found that strong (but not universal) support is expressed for including additional value considerations in gene therapy evaluations. At the same time, values such equity, rights, and solidarity are weakly represented. We suggest the values debate, and resource allocation decisions, would be enriched by a more critical and systematic approach.