Published on in Vol 21, No 2 (2019): February

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/11985, first published .
Digital Trespass: Ethical and Terms-of-Use Violations by Researchers Accessing Data From an Online Patient Community

Digital Trespass: Ethical and Terms-of-Use Violations by Researchers Accessing Data From an Online Patient Community

Digital Trespass: Ethical and Terms-of-Use Violations by Researchers Accessing Data From an Online Patient Community

Authors of this article:

Emil Chiauzzi1 Author Orcid Image ;   Paul Wicks1 Author Orcid Image

Journals

  1. Bunyan A, Venuturupalli S, Reuter K. Expressed symptoms and attitudes toward using Twitter for healthcare engagement among Lupus patients on social media: A protocol for a mixed-methods study (Preprint). JMIR Research Protocols 2019 View
  2. McGranahan R, Rennick-Egglestone S, Ramsay A, Llewellyn-Beardsley J, Bradstreet S, Callard F, Priebe S, Slade M. Curation of Mental Health Recovery Narrative Collections: Systematic Review and Qualitative Synthesis. JMIR Mental Health 2019;6(10):e14233 View
  3. Norval C, Henderson T. Automating Dynamic Consent Decisions for the Processing of Social Media Data in Health Research. Journal of Empirical Research on Human Research Ethics 2020;15(3):187 View
  4. De Clercq E, Rost M, Gumy-Pause F, Diesch T, Espeli V, Elger B. Moving Beyond the Friend-Foe Myth: A Scoping Review of the Use of Social Media in Adolescent and Young Adult Oncology. Journal of Adolescent and Young Adult Oncology 2020;9(5):561 View
  5. Bancroft A. Research in fractured digital spaces. International Journal of Drug Policy 2019;73:288 View
  6. Pagoto S, Waring M, Xu R. A Call for a Public Health Agenda for Social Media Research. Journal of Medical Internet Research 2019;21(12):e16661 View
  7. Ho C, Wright K, Caals K. Involving Families and Children in Online Research. The American Journal of Bioethics 2019;19(6):68 View
  8. Hochheiser H, Valdez R. Human-Computer Interaction, Ethics, and Biomedical Informatics. Yearbook of Medical Informatics 2020;29(01):093 View
  9. Aldridge J, Bouchard M. Leveraging the value of online data and methods: Drug policy research at the cutting edge. International Journal of Drug Policy 2019;73:208 View
  10. Reuter K, Danve A, Deodhar A. Harnessing the power of social media: how can it help in axial spondyloarthritis research?. Current Opinion in Rheumatology 2019;31(4):321 View
  11. Morley J, Machado C, Burr C, Cowls J, Taddeo M, Floridi L. The Debate on the Ethics of AI in Health Care: a Reconstruction and Critical Review. SSRN Electronic Journal 2019 View
  12. Petersen C, Subbian V. Special Section on Ethics in Health Informatics. Yearbook of Medical Informatics 2020;29(01):077 View
  13. Andanda P. Ethical and legal governance of health-related research that use digital data from user-generated online health content. Information, Communication & Society 2020;23(8):1154 View
  14. Mishra B, Saini M, Doherty C, Pitceathly R, Rajan R, Siddiqi O, Ramdharry G, Asranna A, Tomaselli P, Kermode A, Bajwa J, Garg D, Vishnu V. Use of Twitter in Neurology: Boon or Bane?. Journal of Medical Internet Research 2021;23(5):e25229 View
  15. Ford E, Shepherd S, Jones K, Hassan L. Toward an Ethical Framework for the Text Mining of Social Media for Health Research: A Systematic Review. Frontiers in Digital Health 2021;2 View
  16. Walsh J, Cave J, Griffiths F. Spontaneously Generated Online Patient Experience of Modafinil: A Qualitative and NLP Analysis. Frontiers in Digital Health 2021;3 View
  17. Guarita B, Belackova V, van der Gouwe D, Blankers M, Pazitny M, Griffiths P. Monitoring drug trends in the digital environment–New methods, challenges and the opportunities provided by automated approaches. International Journal of Drug Policy 2021;94:103210 View
  18. Mehta N, Zhu L, Lam K, Stall N, Savage R, Read S, Wu W, Pop P, Faulkner C, Bronskill S, Rochon P. Health Forums and Twitter for Dementia Research: Opportunities and Considerations. Journal of the American Geriatrics Society 2020;68(12):2881 View
  19. Skorburg J, Yam J. Is There an App for That?: Ethical Issues in the Digital Mental Health Response to COVID-19. AJOB Neuroscience 2022;13(3):177 View
  20. Rhodes T, Lancaster K. Futures-oriented drugs policy research: Events, trends, and speculating on what might become. International Journal of Drug Policy 2021;94:103332 View
  21. Kempny C, Brzoska P. Anwendungskontexte von Web Scraping in der Versorgungsforschung - Nur für Web-Expert:innen? Oder eine Methode für alle Versorgungsforscher:innen!?. Zeitschrift für Evidenz, Fortbildung und Qualität im Gesundheitswesen 2023;176:61 View
  22. Ossai C, Bedrick S, Orwoll B. Using Publicly Available Reddit Data to Understand How Parents Choose Pediatricians. Journal of Consumer Health on the Internet 2022;26(2):186 View
  23. Braunack-Mayer A, Fabrianesi B, Street J, O'Shaughnessy P, Carter S, Engelen L, Carolan L, Bosward R, Roder D, Sproston K. Sharing Government Health Data With the Private Sector: Community Attitudes Survey. Journal of Medical Internet Research 2021;23(10):e24200 View
  24. Thakur N, Han C. An Exploratory Study of Tweets about the SARS-CoV-2 Omicron Variant: Insights from Sentiment Analysis, Language Interpretation, Source Tracking, Type Classification, and Embedded URL Detection. COVID 2022;2(8):1026 View
  25. Han W, Han X, Zhou S, Zhu Q. The Development History and Research Tendency of Medical Informatics: Topic Evolution Analysis. JMIR Medical Informatics 2022;10(1):e31918 View
  26. Bala R. Challenges and Ethical Issues in Data Privacy. International Journal of Information Retrieval Research 2022;12(2):1 View
  27. Reinius M, Mazzocato P, Riggare S, Bylund A, Jansson H, Øvretveit J, Savage C, Wannheden C, Hasson H. Patient-driven innovations reported in peer-reviewed journals: a scoping review. BMJ Open 2022;12(1):e053735 View
  28. Zong J, Matias J. Bartleby: Procedural and Substantive Ethics in the Design of Research Ethics Systems. Social Media + Society 2022;8(1) View
  29. Mali S. Social media in health care- - Ethically challenging - -Dangerous but attractive- -use with caution. Oral Oncology Reports 2023;7:100079 View
  30. Hong C. Mpox on Reddit: a Thematic Analysis of Online Posts on Mpox on a Social Media Platform among Key Populations. Journal of Urban Health 2023;100(6):1264 View
  31. Dahlberg M, Lek M, Malmqvist Castillo M, Bylund A, Hasson H, Riggare S, Reinius M, Wannheden C. Objectives and outcomes of patient-driven innovations published in peer-reviewed journals: a qualitative analysis of publications included in a scoping review. BMJ Open 2023;13(6):e071363 View
  32. Scheuerman M, Weathington K, Mugunthan T, Denton E, Fiesler C. From Human to Data to Dataset: Mapping the Traceability of Human Subjects in Computer Vision Datasets. Proceedings of the ACM on Human-Computer Interaction 2023;7(CSCW1):1 View
  33. Tanner J, Takats C, Lathan H, Kwan A, Wormer R, Romero D, Jones H. Approaches to Research Ethics in Health Research on YouTube: Systematic Review. Journal of Medical Internet Research 2023;25:e43060 View
  34. Holtorf A, Danyliv A, Krause A, Hanna A, Venable Y, Mattingly T, Huang L, Pierre M, Silveira Silva A, Walsh D. Ethical and legal considerations in social media research for health technology assessment: conclusions from a scoping review. International Journal of Technology Assessment in Health Care 2023;39(1) View
  35. Zurzycka P, Wojtas K, Musiał Z, Puto G, Czyżowicz K. Internet as a source of patient information – Patient Targeted Googling. Pielegniarstwo XXI wieku / Nursing in the 21st Century 2023;22(1):48 View
  36. SØRENSEN J, THOMASSEN J, MEYROWITSCH D, KINGOD N, KONRADSEN F, PLOUG T. Ethical dilemmas in conducting qualitative, public health research on social media: using a study on Facebook as a case. Scandinavian Journal of Public Health 2024 View
  37. Dass R, Packham T, Mehmood R. Brain fog in chronic pain: Protocol for a discourse analysis of social media postings. PLOS ONE 2024;19(5):e0302443 View

Books/Policy Documents

  1. Bancroft A. The Darknet and Smarter Crime. View
  2. Brewer R, Westlake B, Hart T, Arauza O. Researching Cybercrimes. View
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  4. Charles W, Magtanong R. Applied Ethics in a Digital World. View
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  7. Charles W. Comprehensive Precision Medicine. View