It is vital to ensure that any future genomic risk assessment and risk-based cancer screening is acceptable to the Australian public. This is particularly important to achieve a high uptake of the program and help realise its benefits for people’s health. We have used focus groups for an initial exploration of people’s views on genomic risk assessment and risk-based cancer screening, and which particular aspects of such programs could be important to them. For example, focus group participants discussed aspects of convenience, costs, and GP involvement, and what could influence their decision to participate. We then conducted larger surveys to understand people’s preferences, using a health economics method called discrete choice experiments.
In three separate discrete choice experiments of 800 people each, we examined Australians’ views related to 1) the initial decision to do a genomic risk test, 2) the risk assessment and return of results, and 3) subsequent genomic risk-based cancer screening. Our analyses of participants’ responses are helping to determine which potential features of the program are particularly important to them and how much people value different features of the programs (so-called willingness-to-pay, for example value of a risk assessment covering several cancers). We are also examining whether and how specific preferences differ in the population. Finally, we are estimating the potential uptake of hypothetical programs based on their features (for example the scope of the risk assessment and how results are returned).
The work on population preferences within the Australian Cancer Risk Study is led by Dr Amber Salisbury, supervised by A/Prof. Alison Pearce (both based at the Daffodil Centre), working closely with A/Prof. Julia Steinberg, Prof. Anne Cust, Prof. Richard Norman, Prof. Louisa Collins, Ms Cynthia Law, and the wider Australian Cancer Risk Study team.