Work Package 6
Ethics, Governance and Policy
The work package 6 team, based at the Ethox Centre (University of Oxford), are working alongside the other work package researchers, as well as patients and the public, to ensure the ethical, governance and policy issues surrounding cancer genetics are addressed. The work package will particularly focus on three core themes emerging from CanGene-CanVar activities: 1) collection and use of genetic data, 2) the clinical-research translational gap, and 3) reinterpretation of genetic results.
Related to work package 1, the team will be exploring ethical governance in relation to the question:
"How should we collect, share and analyse clinical breast/ovarian cancer date?"
This question is pertinent in cancer genetics, given the power that collection and use of genetic data has for both clinical interpretation of results and improving knowledge around cancer genetics through research.
Read Dr Kate Sahan's blog post unpacking the themes of this question:
"The existence of a gap is an ethical problem"
One of the core aims of the CanGene-CanVar programme is to bridge the translational gap between cancer genetics research and clinical care, but what relationship is there between genetics, research and clinical care beyond the lifetime of the grant?
The work package 6 team will be exploring this relationship and the implications this has for ethics and governance, in particular relating to use of patient data and variant reinterpretation.
This theme has been explored in a recent blog post by Dr Kate Sahan:
Interpreting results from cancer genetic tests can be difficult as many lines of evidence need to be considered to determine the likelihood of a variant being disease-causing or not.
With genetics/genomics being a relatively new field of clinical care, new evidence lines are often arising from research that can alter the interpretation of a result.
There is much conversation about the ethical and legal responsibility to retrospectively 'reclassify' results and inform patients given the relevance this could have to their healthcare and cancer risk.
Should this be done routinely? For how long is there an expectation following a patient's initial test? Who does the responsibility fall too? Can the patient opt out of recontact? What about their right not to know?
Meet The Team
The CanGene-CanVar programme is running from (2019 - 2024) with individual milestones for our work streams targetted for completion at different times during this period. We do not yet have any outputs from this particular work package, but the hard work is ongoing and we look forward to sharing news and outputs with you as soon as they are published!