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

Policy and Policy Proposals (139) Ethics, Privacy, and Legal Issues (561) Secondary Use of Clinical Data for Research and Surveillance (427) Health Information Governance (28)

Published on in Vol 22, No 5 (2020): May

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/16346, first published .
Toward a Risk-Utility Data Governance Framework for Research Using Genomic and Phenotypic Data in Safe Havens: Multifaceted Review

Toward a Risk-Utility Data Governance Framework for Research Using Genomic and Phenotypic Data in Safe Havens: Multifaceted Review

Toward a Risk-Utility Data Governance Framework for Research Using Genomic and Phenotypic Data in Safe Havens: Multifaceted Review

Authors of this article:

Kerina Jones1 Author Orcid Image ;   Helen Daniels1 Author Orcid Image ;   Sharon Heys1 Author Orcid Image ;   Arron Lacey1 Author Orcid Image ;   David V Ford1 Author Orcid Image
Article Authors Cited by (8) Tweetations (4) Metrics

Journals

  1. Balcombe L, De Leo D. Digital Mental Health Challenges and the Horizon Ahead for Solutions. JMIR Mental Health 2021;8(3):e26811 View
  2. Daniels H, Hollinghurst J, Fry R, Clegg A, Hillcoat-Nallétamby S, Nikolova S, Rodgers S, Williams N, Akbari A. The Value of Routinely Collected Data in Evaluating Home Assessment and Modification Interventions to Prevent Falls in Older People: Systematic Literature Review. JMIR Aging 2021;4(2):e24728 View
  3. Daniels H, Jones K, Heys S, Ford D. Exploring the Use of Genomic and Routinely Collected Data: Narrative Literature Review and Interview Study. Journal of Medical Internet Research 2021;23(9):e15739 View
  4. Elstub S, Thompson R, Escobar O, Hollinghurst J, Grimes D, Aitken M, McKeon A, Jones K, Waud A, Sethi N. The Resilience of Pandemic Digital Deliberation: An Analysis of Online Synchronous Forums. Javnost - The Public 2021;28(3):237 View
  5. Cumyn A, Ménard J, Barton A, Dault R, Lévesque F, Ethier J. Patients’ and Members of the Public’s Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review. Journal of Medical Internet Research 2023;25:e45002 View
  6. Bilodeau E, Cumyn A, Ménard J, Barton A, Dault R, Ethier J. Utilisations secondaires des données de santé : impacts de la transparence. Canadian Journal of Bioethics 2024;7(2-3):118 View
  7. Chu A, Sze S, Tse D, Lai C, Ng C, Yu C, Chung P, Pang F, Chung B, Lo S, Quan J. Experiences of participants with undiagnosed diseases and hereditary cancers during the initial phase of the Hong Kong genome project: a mixed-methods study. Human Genomics 2025;19(1) View

Books/Policy Documents

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