Developing an online dynamic consent platform to support personalised, accessible and informed consent for genomic testing in oncology

Abstract

Genomic settings are complex and challenging for informed decision making. Partnering with patients and professionals, we aimed to codesign an innovative intervention for cancer patients to improve decision making and COnsent in GENomic Testing (CoGenT).   The CoGenT intervention is an online Dynamic Consent Platform that incorporates the first Question Prompt List about genomic testing and research, with answers addressing patient information needs. It was codesigned iteratively using input and feedback gathered during three rounds of interviews with 38 stakeholders (cancer patients who were/were not taking part in genomic research, carers, study coordinators, clinicians), guided by a multidisciplinary steering committee.   Information needs revolved around the nature of genomic testing, results and implications, and research participation. Views on the intervention highlighted its potential value to support cancer patients who are offered genomic testing by informing them in a flexible way and enabling them to indicate their preferences and identify where they need further support. Interviews demonstrated the importance of optimizing clarity, accessibility, and engagement in the CoGenT intervention.   The CoGenT intervention is valued by patients, clinicians, and research personnel. This work will facilitate equitable access to cancer genomic research by ensuring consent processes meet the needs of key stakeholders. We will pilot the CoGenT intervention to assess effects on decision quality outcomes compared with usual consent processes in cancer genomic studies. If results are positive, these evidence-based resources will help establish practices to follow when genomic testing enters routine care, with patients and families well-prepared and supported before, during and after testing.