Some people die of cancer because they don’t learn of their inherited risk until it is too late. Many of the several dozen genes associated with high cancer risk were identified three decades ago. But interpretation of risk is still hampered by incomplete sharing and linking of data. The Sulston Project has studied policies that might improve data flow and interpretation. This Greenwall project will build on three years of work by partnering with Burness Communications to refine policy options, craft a communication strategy, identify key policy nodes, organize briefings, and augment web presence and use of digital tools.
Our Grants
Policies to improve assessment of inherited cancer risk
Robert Cook-Deegan, MD
Arizona State University
Arizona State University
Grant Type
Bridging Bioethics Research & Policymaking
Grant Cycle
2022
Duration
12 months
Amount
$50,000
Grantee Q&A
We ask Bridging Bioethics Research & Policymaking grantees about lessons learned for increasing bioethics’ impact on policymaking.
Who was the intended audience for your project?
We sought to reach Congress by briefing the House and Senate Judiciary Committees, the House Energy and Commerce and Ways and Means Committees, and the Senate Finance and Health, Education, Labor and Pensions Committees. We also briefed Federal agencies, such as the NIH and Centers for Medicaid and Medicare Services.
What message did you seek to deliver and how?
Our goal was to develop a collective knowledge commons for predicting inherited cancer risk by preventing back-tracking on patent eligibility and promoting flow of data to public databases for assessing genetic risk. Our approach was to make a public-facing website and written materials to communicate why the policy choices were important. We wanted to motivate policymakers to create incentives for improved collaboration in cancer research, and to reduce the disconnect between laboratories that are generating data and public databases that are interpreting the data.
How did you involve collaborators outside of bioethics research in your project?
Experts at Burness Communications helped guide our communications efforts. They shifted our draft website from a work site into something more professional and public-facing, helped us refine our messaging and prepare materials suited for those in Congress and federal agencies, and trained our team in best practices for delivering the message.
What lessons did you learn about translating bioethics research to policymaking?
Communication is key. Collaborating with communications experts taught our team how to make their work directly useful to policymakers. That skill set and the experience of making our research relevant to policy was particularly valuable for young trainees. Now that we have sharpened communication skills, we can move forward independently and effectively in making our research findings relevant to policy decisions.
Grant Focus Areas
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