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

Digital Health Reviews (1883) Ethics, Privacy, and Legal Issues (685) Electronic Health Records (1425) Precision Medicine and Genetics (87) Precision Medicine (194)

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

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/16734, first published .
Doctor reviewing patient health information on a tablet with a stylus.

Ethical, Legal, and Social Issues Related to the Inclusion of Individuals With Intellectual Disabilities in Electronic Health Record Research: Scoping Review

Ethical, Legal, and Social Issues Related to the Inclusion of Individuals With Intellectual Disabilities in Electronic Health Record Research: Scoping Review

Authors of this article:

Melissa Raspa1 Author Orcid Image ;   Rebecca Moultrie1 Author Orcid Image ;   Laura Wagner1 Author Orcid Image ;   Anne Edwards1 Author Orcid Image ;   Sara Andrews1 Author Orcid Image ;   Mary Katherine Frisch2 Author Orcid Image ;   Lauren Turner-Brown2 Author Orcid Image ;   Anne Wheeler1 Author Orcid Image
Article Authors Cited by (9) Tweetations (8) Metrics

Journals

  1. Raspa M, Paquin R, Brown D, Andrews S, Edwards A, Moultrie R, Wagner L, Frisch M, Turner-Brown L, Wheeler A. Preferences for Accessing Electronic Health Records for Research Purposes: Views of Parents Who Have a Child With a Known or Suspected Genetic Condition. Value in Health 2020;23(12):1639 View
  2. Purna singh A, Vadakedath S, Kandi V. Clinical Research: A Review of Study Designs, Hypotheses, Errors, Sampling Types, Ethics, and Informed Consent. Cureus 2023 View
  3. Rahman M, Muniyandi R, Sahran S, Mohamed S. Enhancement of an Optimized Key for Database Sanitization to Ensure the Security and Privacy of an Autism Dataset. Symmetry 2021;13(10):1912 View
  4. van Kessel R, Ranganathan S, Anderson M, McMillan B, Mossialos E. Exploring potential drivers of patient engagement with their health data through digital platforms: A scoping review. International Journal of Medical Informatics 2024;189:105513 View
  5. Orlova N, Suvorov G, Karseladze N, Yakushev Y, Gololobova T. The possibilities of big data in pharmacoepidemiology, problems of use, legal regulation. National Health Care (Russia) 2024;5(2):25 View
  6. Kamalzadeh H, Mastaneh Z, Abedini S. Navigating ethics: Nurses’ experiences with hospital information systems in the digital age. Nursing Ethics 2026;33(2):400 View
  7. Murdoch N, Lessner Listiakova I. Encounters of help: disabled people negotiating help and participation in public spaces. Disability & Society 2026;41(4):950 View
  8. Hotez E, Tomiyama A. Aligning Biomedical Research With Neurodiversity to Support the Metabolic Health of Autistic Individuals. Obesity Science & Practice 2026;12(1) View
  9. Sabatello M, Cooley M, Banzer E, Lewis V C, Goode T, Kiryluk K, McDonald K, Anggraito H, Shepherd K, Raspa M, Fialka-Feldman M, Romer R, Carrion R, Dinerstein R, Olick R, Lebel R, Dasgupta S, Thurschwell S, Nelis T, Sessoms Y. “It is important to me to know where the information is going”: Views of adults with intellectual disability on data sharing in precision medicine research. Genetics in Medicine Open 2026;4:104368 View