This paper is in the following e-collection/theme issue:

Viewpoints and Perspectives (514) Data Science (270) Digital Science, Open Science (79) E-Health Policy and Health Systems Innovation (230) Ethics, Privacy, and Legal Issues (479) Machine Learning (1465) Health Information Governance (19)

Published on in Vol 22, No 7 (2020): July

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/18087, first published .
Bringing Code to Data: Do Not Forget Governance

Bringing Code to Data: Do Not Forget Governance

Bringing Code to Data: Do Not Forget Governance

Authors of this article:

Christine Suver1 Author Orcid Image ;   Adrian Thorogood2 Author Orcid Image ;   Megan Doerr1 Author Orcid Image ;   John Wilbanks1 Author Orcid Image ;   Bartha Knoppers2 Author Orcid Image
Article Authors Cited by (11) Tweetations (13) Metrics

Journals

  1. Ganzinger M, Blumenstock M, Fürstberger A, Greulich L, Kestler H, Marschollek M, Niklas C, Schneider T, Spreckelsen C, Tute E, Varghese J, Dugas M. Federated electronic data capture (fEDC): Architecture and prototype. Journal of Biomedical Informatics 2023;138:104280 View
  2. Casaletto J, Parsons M, Markello C, Iwasaki Y, Momozawa Y, Spurdle A, Cline M. Federated analysis of BRCA1 and BRCA2 variation in a Japanese cohort. Cell Genomics 2022;2(3):100109 View
  3. Thaldar D, Townsend B, Donnelly D, Botes M, Gooden A, van Harmelen J, Shozi B. The multidimensional legal nature of personal genomic sequence data: A South African perspective. Frontiers in Genetics 2022;13 View
  4. Rahimzadeh V, Lawson J, Rushton G, Dove E. Leveraging Algorithms to Improve Decision-Making Workflows for Genomic Data Access and Management. Biopreservation and Biobanking 2022;20(5):429 View
  5. Thorogood A, Rehm H, Goodhand P, Page A, Joly Y, Baudis M, Rambla J, Navarro A, Nyronen T, Linden M, Dove E, Fiume M, Brudno M, Cline M, Birney E. International federation of genomic medicine databases using GA4GH standards. Cell Genomics 2021;1(2):100032 View
  6. Verhulst S, Young A. Identifying and addressing data asymmetries so as to enable (better) science. Frontiers in Big Data 2022;5 View
  7. Singh K, Li S, Jahnke I, Alarcon M, Mosa A, Calyam P. Improving big data governance in healthcare institutions: user experience research for honest broker based application to access healthcare big data. Behaviour & Information Technology 2024;43(6):1067 View
  8. Bernier A, Molnár-Gábor F, Knoppers B, Borry P, Cesar P, Devriendt T, Goisauf M, Murtagh M, Jiménez P, Recuero M, Rial-Sebbag E, Shabani M, Wilson R, Zaccagnini D, Maxwell L. Reconciling the biomedical data commons and the GDPR: three lessons from the EUCAN ELSI collaboratory. European Journal of Human Genetics 2024;32(1):69 View
  9. Stark Z, Glazer D, Hofmann O, Rendon A, Marshall C, Ginsburg G, Lunt C, Allen N, Effingham M, Hastings Ward J, Hill S, Ali R, Goodhand P, Page A, Rehm H, North K, Scott R. A call to action to scale up research and clinical genomic data sharing. Nature Reviews Genetics 2024 View
  10. Heavner S, Kumar V, Anderson W, Al-Hakim T, Dasher P, Armaignac D, Clermont G, Cobb J, Manion S, Remy K, Reuter-Rice K, Haendel M. Critical Data for Critical Care: A Primer on Leveraging Electronic Health Record Data for Research From Society of Critical Care Medicine’s Panel on Data Sharing and Harmonization. Critical Care Explorations 2024;6(11):e1179 View

Books/Policy Documents

  1. Thorogood A, Chokoshvili D. Handbook of Bioethical Decisions. Volume I. View