John Sulston, the projects namesake, was a champion of sharing scientific data to improve science and inform clinical decisions. Fittingly, he helped establish the 1996 Bermuda Principles with goals of rapid, electronic sharing of data generated by the Human Genome Project to benefit science and society. Today, sharing of genomic data has become more commonplace and yet still incredibly challenging to do.
Despite a growing norm of open science, concerns about proprietary rights remain a barrier to collecting and sharing data on a large scale for research and clinical use for all inherited cancer variants, or what could be called a cancer genomic variant commons. As more efforts to create cancer genomic variant commons that provide open access to data pooled from multiple sources are underway, such as the National Cancer Institute Genomic Data Commons, policies are evolving that could become a model for genomic data sharing more generally.
The overarching goal of the Sulston Project is to develop empirically-informed policy options to address the challenges of the nascent cancer genomic variant commons. We will engage relevant stakeholders to accomplish this work and inform policy in a way that balances proprietary and commercial interests with the generation of a public good -- information and knowledge about cancer-risk variants -- for public health benefit.
We aim to:
- Describe data sharing structures and practices for inherited cancer-risk variants.
- Identify the challenges of developing a sustainable commons for inherited cancer-risk variants.
- Formulate policy options to address the most important challenges identified, and map policy options to institutions and actors who can act on them.
- Translate findings and policy options by engaging with policy-makers and other actors.
Supported by: R01CA237118, National Cancer Institute, NIH, 2019 - 2023
- Robert M. Cook-Deegan, M.D., Principal Investigator
- Amy L. McGuire, J.D., Ph.D., Principal Investigator
- Christi Guerrini, J.D., M.P.H., Co-Investigator
- Mary Anderlik Majumder, J.D., Ph.D., Co-Investigator
Additional Project Information
Read more about our related work by visiting the webpage for two related studies: the PoliSeq project (McGuire R01 HG006460) examined the clinical integration of next generation sequencing technologies using a modified policy Delphi process, and Building the Medical Information Commons (McGuire R01 HG008918) examined issues confronted in fulfilling the aspirations of the 2011 NASEM report on Precision Medicine, which called for the creation of medical information commons.
Visit the Sulston Project website for more information.
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Majumder MA, Blank ML, Geary J, Bollinger JM, Guerrini CJ, Robinson JO, Canfield I, Cook-Deegan R, McGuire AL. Challenges to Building a Gene Variant Commons to Assess Hereditary Cancer Risk: Results of a Modified Policy Delphi Panel Deliberation. Journal of Personalized Medicine. 2021 Jul 8;11(7):646.
Fresh Air for Genetic Data Sharing. ELSIcon2022: Innovating for a Just and Equitable Future. Guerrini C, McGuire A, Robinson J, Blank M, Cook-Deegan R, Bollinger J, Geary J, Majumder M (2022).
Majumder MA, Gutierrez AM, Geary J, McGuire AL. “Equity considerations, challenges, and policy options for creating an effective knowledge commons for hereditary cancer risk.” American Society for Bioethics and Humanities Annual Conference. October 13-16, 2021. Panel presentation.
Supplement Project: A Case Study on Latinx Community Perspectives about Creating a Cancer Genomic Variant Commons
This qualitative case study is a Sulston supplement project that aims to explore the experiences of Hispanic/Latino communities in the U.S. with genetic testing for hereditary cancer risk. To do this, we are conducting 60 interviews across the U.S. with three stakeholder groups: genetics experts, patient advocates, and patients/members of the community. Through these stakeholder interviews, we will identify challenges and potential policy options related to improving access to genetic testing among Hispanic/Latino groups, with special attention to the heterogeneity of the US Hispanic/Latino population. This study includes a focus on policy translation, where we will communicate our empirical findings and policy implications to stakeholders, policymakers, and the scientific community. This project complements the goals of the Sulston Project by helping propose policy options for more effective inclusion of underserved groups in a cancer genomic variant commons.
Supported by: R01CA237118-S1, National Cancer Institute, NIH
Gutierrez AM, McGuire AL, Cook-Deegan R. “Disparities in access to genetic testing for hereditary cancer risk among Hispanic/Latino populations: Stakeholders’ views of barriers and potential solutions.” American Public Health Association Annual Meeting. October 23-27, 2021. Poster presentation.