Sharing cancer gene variant and relevant clinical data could accelerate progress in cancer genomics. However, data sharing is currently impeded by issues related to financial sustainability, equity, incentives, privacy and security, and data quality. Evidence-based policy options to facilitate data sharing in these domains, and ultimately improve interpretation of cancer-associated genomic variants, are therefore needed.
The overall goal of this project is to produce a foundation of
empirical knowledge, on which we can build policy options to address
the challenges that confront the nascent knowledge scommons concerning
variants associated with inherited cancer risk. We will map those
options to institutions and those with authority to act on them.
Aim 1:
Describe data sharing structures and practices for inherited
cancer-risk variants.
|
Aim 2:
Identify the challenges of developing a sustainable commons
for inherited cancer-risk variants.
Aim 3:
Formulate policy options to address the most important
challenges identified in Aim 2.
Aim 4:
Translate findings and options from Aims 1-3 by engaging with
policy-makers and other actors.
IMPORTANCE
This project is urgent and significant because the clinical and scientific stakes are very high: people facing agonizing decisions about management of inherited cancer risk must have access to reliable genomic information. Additional impact will come from using these results to help design future genomic commons. This project is innovative in its use of mixed methods, incorporating a Delphi framework into a policy-committee structure, and its explicit attention to policy translation and engagement. It will be feasible, as demonstrated by the productivity of this team in prior work, our experience with the methods and knowledge about the existing elements of a commons, and the combination of theory and empirical social science we will employ.