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Grant Details

Grant Number: 5R01CA237118-04 Interpret this number
Primary Investigator: Cook-Deegan, Robert
Organization: Arizona State University-Tempe Campus
Project Title: The Sulston Project: Making the Knowledge Commons for Interpreting Cancer Genomic Variants More Effective
Fiscal Year: 2022


Abstract

PROJECT SUMMARY Efforts to create a cancer genomic commons are already underway, yet data sharing practices face daunting challenges. Ulti- mately, a genomic knowledge commons will only be successful if appropriate data-sharing policies that address disincentives for sharing and implementation challenges are developed and mapped onto the institutions and actors who can enact such change. In our previous work (McGuire R01HG006460), experts ranked data-sharing as the most important, yet least politically tractable policy challenge among 17 posed in a modified Delphi process. The objective of this proposal is to engage expert advisors and relevant stakeholders to identify and rank challenges, generate policy solutions, and translate findings into action in a specific domain poised to make progress, to ensure the success of a cancer genomic commons. Throughout the project, we will engage our expert multi-disciplinary advisory com- mittee to solicit their input. In Aim 1, we will conduct a historical case study of the knowledge commons that exists in cancer genomics, as well as identify alternative frameworks for data sharing practices. In Aim 2, we will analyze the case study and conduct qualitative interviews with stakeholders in relevant constituencies to identify and further examine the challenges identi- fied in Aim 1. In Aim 3, we will employ a policy Delphi process with advisory committee members to refine, rank, and generate solutions to key policy issues. In Aim 4, we will take the policy map from Aims 1-3 and tailor findings and policy options to specific target audiences, and present information in a form they can use. This contribution is significant because it addresses a pressing clinical need to interpret the clinical significance of genomic variants, and to build infrastructure and practices to advance scientific understanding of cancer genomics. It will provide information needed to structure a cancer genomic com- mons. A sustainable, effective commons is critical to the integration of genomic information in the management of inherited cancer risk, as well as advancing understanding of cancer biology. The approach is innovative by engaging a diverse and repre- sentative group of stakeholders, providing them with several sources of systematic empirical input to identify policy challenges, generate solutions and map those to the appropriate institutions and actors. It is also innovative in translating findings and options through systematic policy engagement. The work is feasible in our hands because our team of established investigators have expertise in ethical and policy issues related to large-scale data sharing and a track record of success working together on large collaborative projects addressing ethical and policy issues in genomics. Sulston Project: cancer genomic variant commons 22-line summary 1



Publications

Development of an Open Database of Genes Included in Hereditary Cancer Genetic Testing Panels Available From Major Sources in the US.
Authors: Geary J. , Majumder M. , Guerrini C. , Cook-Deegan R. .
Source: JAMA oncology, 2022-04-01; 8(4), p. 1-3.
PMID: 35113133
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Updating the Bayh-Dole Act: March-in Rights and Transparency.
Authors: Cook-Deegan R. , Kesselheim A.S. , Sarpatwari A. .
Source: JAMA, 2022-03-08; 327(10), p. 923-924.
PMID: 35201276
Related Citations

U.S. Adult Perspectives on Facial Images, DNA, and Other Biometrics.
Authors: Katsanis S.H. , Claes P. , Doerr M. , Cook-Deegan R. , Tenenbaum J.D. , Evans B.J. , Lee M.K. , Anderton J. , Weinberg S.M. , Wagner J.K. .
Source: IEEE transactions on technology and society, 2022 Mar; 3(1), p. 9-15.
EPub date: 2021-10-18.
PMID: 35360665
Related Citations

How NFTs could transform health information exchange.
Authors: Kostick-Quenet K. , Mandl K.D. , Minssen T. , Cohen I.G. , Gasser U. , Kohane I. , McGuire A.L. .
Source: Science (New York, N.Y.), 2022-02-04; 375(6580), p. 500-502.
EPub date: 2022-02-03.
PMID: 35113709
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Balancing openness with Indigenous data sovereignty: An opportunity to leave no one behind in the journey to sequence all of life.
Authors: Mc Cartney A.M. , Anderson J. , Liggins L. , Hudson M.L. , Anderson M.Z. , TeAika B. , Geary J. , Cook-Deegan R. , Patel H.R. , Phillippy A.M. .
Source: Proceedings of the National Academy of Sciences of the United States of America, 2022-01-25; 119(4), .
PMID: 35042810
Related Citations

GA4GH: International policies and standards for data sharing across genomic research and healthcare.
Authors: Rehm H.L. , Page A.J.H. , Smith L. , Adams J.B. , Alterovitz G. , Babb L.J. , Barkley M.P. , Baudis M. , Beauvais M.J.S. , Beck T. , et al. .
Source: Cell genomics, 2021-11-10; 1(2), .
PMID: 35072136
Related Citations

Governing Heritable Human Genome Editing: A Textual History and a Proposal for the Future.
Authors: Walters L. , Cook-Deegan R.M. , Adashi E.Y. .
Source: The CRISPR journal, 2021 Aug; 4(4), p. 469-476.
PMID: 34406046
Related Citations

Challenges to Building a Gene Variant Commons to Assess Hereditary Cancer Risk: Results of a Modified Policy Delphi Panel Deliberation.
Authors: Majumder M.A. , Blank M.L. , Geary J. , Bollinger J.M. , Guerrini C.J. , Robinson J.O. , Canfield I. , Cook-Deegan R. , McGuire A.L. .
Source: Journal of personalized medicine, 2021-07-08; 11(7), .
EPub date: 2021-07-08.
PMID: 34357113
Related Citations

We Have "Gifted" Enough: Indigenous Genomic Data Sovereignty in Precision Medicine.
Authors: Tsosie K.S. , Yracheta J.M. , Kolopenuk J.A. , Geary J. .
Source: The American journal of bioethics : AJOB, 2021 Apr; 21(4), p. 72-75.
PMID: 33825628
Related Citations

Complicated legacies: The human genome at 20.
Authors: Jones K.M. , Cook-Deegan R. , Rotimi C.N. , Callier S.L. , Bentley A.R. , Stevens H. , Phillips K.A. , Jansen J.P. , Weyant C.F. , Roberts D.E. , et al. .
Source: Science (New York, N.Y.), 2021-02-05; 371(6529), p. 564-569.
EPub date: 2021-02-04.
PMID: 33542123
Related Citations

Toward better governance of human genomic data.
Authors: O'Doherty K.C. , Shabani M. , Dove E.S. , Bentzen H.B. , Borry P. , Burgess M.M. , Chalmers D. , De Vries J. , Eckstein L. , Fullerton S.M. , et al. .
Source: Nature genetics, 2021 Jan; 53(1), p. 2-8.
PMID: 33414545
Related Citations

Data Sharing in the Context of Health-Related Citizen Science.
Authors: Majumder M.A. , McGuire A.L. .
Source: The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 2020 Mar; 48(1_suppl), p. 167-177.
PMID: 32342743
Related Citations

Who Owns the Data in a Medical Information Commons?
Authors: McGuire A.L. , Roberts J. , Aas S. , Evans B.J. .
Source: The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 2019 Mar; 47(1), p. 62-69.
PMID: 30994077
Related Citations

Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons.
Authors: Deverka P.A. , Gilmore D. , Richmond J. , Smith Z. , Mangrum R. , Koenig B.A. , Cook-Deegan R. , Villanueva A.G. , Majumder M.A. , McGuire A.L. .
Source: The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 2019 Mar; 47(1), p. 70-87.
PMID: 30994071
Related Citations

Characterizing the Biomedical Data-Sharing Landscape.
Authors: Villanueva A.G. , Cook-Deegan R. , Koenig B.A. , Deverka P.A. , Versalovic E. , McGuire A.L. , Majumder M.A. .
Source: The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 2019 Mar; 47(1), p. 21-30.
PMID: 30994069
Related Citations

Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons.
Authors: McGuire A.L. , Majumder M.A. , Villanueva A.G. , Bardill J. , Bollinger J.M. , Boerwinkle E. , Bubela T. , Deverka P.A. , Evans B.J. , Garrison N.A. , et al. .
Source: The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 2019 Mar; 47(1), p. 12-20.
PMID: 30994067
Related Citations

What is a Medical Information Commons?
Authors: Bollinger J.M. , Zuk P.D. , Majumder M.A. , Versalovic E. , Villanueva A.G. , Hsu R.L. , McGuire A.L. , Cook-Deegan R. .
Source: The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 2019 Mar; 47(1), p. 41-50.
PMID: 30994065
Related Citations

Genomic Data-Sharing Practices.
Authors: Villanueva A.G. , Cook-Deegan R. , Robinson J.O. , McGuire A.L. , Majumder M.A. .
Source: The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 2019 Mar; 47(1), p. 31-40.
PMID: 30994063
Related Citations

Introduction: Sharing Data in a Medical Information Commons.
Authors: Cook-Deegan R. , Majumder M.A. , McGuire A.L. .
Source: The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 2019 Mar; 47(1), p. 7-11.
PMID: 30994058
Related Citations

The Bermuda Triangle: The Pragmatics, Policies, and Principles for Data Sharing in the History of the Human Genome Project.
Authors: Maxson Jones K. , Ankeny R.A. , Cook-Deegan R. .
Source: Journal of the history of biology, 2018 Dec; 51(4), p. 693-805.
PMID: 30390178
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