Bringing Code to Data: Do Not Forget Governance

作者: Christine Suver , Adrian Thorogood , Megan Doerr , John Wilbanks , Bartha Knoppers

DOI: 10.2196/18087

关键词: Context (language use)Cloud computingData sharingInformation privacyCopyingData managementScientific freedomComputer scienceData scienceResource (project management)

摘要: Developing or independently evaluating algorithms in biomedical research is difficult because of restrictions on access to clinical data. Access restricted privacy concerns, the proprietary treatment data by institutions (fueled part cost hosting, curation, and distribution), concerns over misuse, complexities applicable regulatory frameworks. The use cloud technology services can address many barriers sharing. For example, researchers high performance, secure, auditable computing environments without need for copying downloading. An alternative path accessing sets requiring additional protection model-to-data approach. In model-to-data, submit run secure that remain hidden. Model-to-data designed enhance security local control while enabling communities generate new knowledge from sequestered has not yet been widely implemented, but pilots have demonstrated its utility when technical legal constraints preclude other methods We argue make a valuable addition our sharing arsenal, with 2 caveats. First, should only be adopted where necessary supplement rather than replace existing data-sharing approaches given it requires significant resource commitments stewards limits scientific freedom, reproducibility, scalability. Second, although reduces loss data, an ethical panacea. Data will hesitant adopt guidance how do so responsibly. To this gap, we explored open science, security, respect subjects, ethics oversight must re-evaluated context.

参考文章(25)
Lincoln D. Stein, Bartha M. Knoppers, Peter Campbell, Gad Getz, Jan O. Korbel, Data analysis: Create a cloud commons Nature. ,vol. 523, pp. 149- 151 ,(2015) , 10.1038/523149A
, Prepublication data sharing Nature. ,vol. 461, pp. 168- 170 ,(2009) , 10.1038/461168A
Paul R. Burton, Madeleine J. Murtagh, Andy Boyd, James B. Williams, Edward S. Dove, Susan E. Wallace, Anne-Marie Tassé, Julian Little, Rex L. Chisholm, Amadou Gaye, Kristian Hveem, Anthony J. Brookes, Pat Goodwin, Jon Fistein, Martin Bobrow, Bartha M. Knoppers, Data Safe Havens in health research and healthcare Bioinformatics. ,vol. 31, pp. 3241- 3248 ,(2015) , 10.1093/BIOINFORMATICS/BTV279
Eric E Schadt, The changing privacy landscape in the era of big data Molecular Systems Biology. ,vol. 8, pp. 612- 612 ,(2012) , 10.1038/MSB.2012.47
Erik M van Mulligen, Philippe Rocca-Serra, Maryann E Martone, Mercè Crosas, Erik A Schultes, Olivier Dumon, Morris A Swertz, Ingrid Dillo, Barend Mons, Barend Mons, Susanna-Assunta Sansone, Jeffrey S. Grethe, Jan Velterop, Scott Edmunds, Bengt L. Persson, Andra Waagmeester, Johan van der Lei, Anthony J. Brookes, Michel Dumontier, Thierry Sengstag, Jildau Bouwman, Abel L Packer, Alejandra González-Beltrán, Peter A.C ’t Hoen, Luiz Bonino da Silva Santos, Chris T. Evelo, Jaap Heringa, IJsbrand Jan Aalbersberg, Niklas Blomberg, Carole Goble, Alasdair J.G. Gray, Joost N. Kok, Richard Finkers, Philip E. Bourne, Mark Thompson, Rob W.W. Hooft, Tobias Kuhn, Jan-Willem Boiten, Paul Groth, Jun Zhao, Albert Mons, Ruben Kok, Arie Baak, Tim Clark, Gabrielle Appleton, Rene van Schaik, Mark D Wilkinson, Scott J Lusher, George Strawn, Marco Roos, Peter Wittenburg, Ted Slater, Katherine Wolstencroft, Myles Axton, The FAIR Guiding Principles for scientific data management and stewardship Scientific Data. ,vol. 3, pp. 160018- 160018 ,(2016) , 10.1038/SDATA.2016.18
J. L. Contreras, J. H. Reichman, Sharing by design: Data and decentralized commons Science. ,vol. 350, pp. 1312- 1314 ,(2015) , 10.1126/SCIENCE.AAA7485
David Townend, Edward S Dove, Dianne Nicol, Jasper Bovenberg, Bartha M Knoppers, Streamlining ethical review of data intensive research. BMJ. ,vol. 354, ,(2016) , 10.1136/BMJ.I4181
Maryam Garza, Guilherme Del Fiol, Jessica Tenenbaum, Anita Walden, Meredith Nahm Zozus, Evaluating common data models for use with a longitudinal community registry. Journal of Biomedical Informatics. ,vol. 64, pp. 333- 341 ,(2016) , 10.1016/J.JBI.2016.10.016