Societal views on using risk-based innovations to inform cancer screening and referral policies: findings from three community juries

Abstract

Abstract Background Recent advances mean that innovations are emerging that enable better stratification of individuals based on their risk of cancer so that screening or diagnostic investigations can be targeted to those at greatest need. We explored the views of the public, from a societal perspective, of using such risk-based innovations to identify people’s cancer risk and allocating healthcare accordingly.

Methods We conducted three community juries, each with 7–9 participants. Participants were informed about the topic and potential novel risk-based innovations through a series of presentations from experts and discussions. Polygenic risk scores, geodemographic segmentation, continuous monitoring of biomarkers, minimally invasive tests, artificial intelligence analysis of medical records, and wearable devices were used as examples. The participants then deliberated over the research questions before reporting their verdicts on the acceptability of these novel data-based approaches in principle. Transcripts were analysed using codebook thematic analysis.

Results All juries found that the proposed risk-based approaches to cancer healthcare were, in general, acceptable. Primarily this was because the approaches would enable use of information in a positive and constructive way. However, there were a number of qualifiers or caveats. In particular, participants highlighted the necessity of using accurate and robust data with a well-evidenced association with cancer risk. They also expressed concerns about unintended consequences such as for insurance, scams or erosion of personal liberty, and the burden to participate in data collection across society. All agreed that opting-out must be straightforward.

Conclusions Informed members of the public supported the concept of using innovations to estimate cancer risk and inform healthcare. Their priorities for accuracy, data security, participation burden, and personal liberty and choice tended to overlap with those of developers and policymakers. Work to ready these innovations for implementation should continue, with the public’s priorities accounted for in their development and dissemination in order to address any unintended consequences upfront.