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

Ethics, Privacy, and Legal Issues (479) Medicine 2.0: Social Media, Open, Participatory, Collaborative Medicine (1641) Recruitment of Research Participants (296)

Published on in Vol 19, No 4 (2017): April

This is a member publication of Centre for Global eHealth Innovation, Toronto, ON, Canada

Ethics and Privacy Implications of Using the Internet and Social Media to Recruit Participants for Health Research: A Privacy-by-Design Framework for Online Recruitment

Ethics and Privacy Implications of Using the Internet and Social Media to Recruit Participants for Health Research: A Privacy-by-Design Framework for Online Recruitment

Ethics and Privacy Implications of Using the Internet and Social Media to Recruit Participants for Health Research: A Privacy-by-Design Framework for Online Recruitment

Authors of this article:

Jacqueline Lorene Bender1, 2 Author Orcid Image ;   Alaina B Cyr3 Author Orcid Image ;   Luk Arbuckle4 Author Orcid Image ;   Lorraine E Ferris2 Author Orcid Image
Article Authors Cited by (97) Tweetations (45) Metrics

Journals

  1. Beier M, Früh S. Nutzung von Social Media Plattformen durch Schweizer Spitäler - Eigene Accounts, Nutzungsintensitäten und Reichweiten (Swiss Hospitals on Social Media Platforms: Own Accounts, Communication Frequencies and Reach). SSRN Electronic Journal 2018 View
  2. Beier M, Früh S. Swiss Hospitals on Social Media Platforms: Own Accounts, Communication Frequencies and Reach. SSRN Electronic Journal 2019 View
  3. Balasubramanian A, Thirumavalavan N, Srivatsav A, Yu J, Lipshultz L, Pastuszak A. Testosterone Imposters: An Analysis of Popular Online Testosterone Boosting Supplements. The Journal of Sexual Medicine 2019;16(2):203 View
  4. Musker M, Short C, Licinio J, Wong M, Bidargaddi N. Using behaviour change theory to inform an innovative digital recruitment strategy in a mental health research setting. Journal of Psychiatric Research 2020;120:1 View
  5. Watson J. Social Media Use in Cancer Care. Seminars in Oncology Nursing 2018;34(2):126 View
  6. Benedict C, Hahn A, Diefenbach M, Ford J. Recruitment via social media: advantages and potential biases. DIGITAL HEALTH 2019;5 View
  7. Hokke S, Hackworth N, Quin N, Bennetts S, Win H, Nicholson J, Zion L, Lucke J, Keyzer P, Crawford S, Jan Y. Ethical issues in using the internet to engage participants in family and child research: A scoping review. PLOS ONE 2018;13(9):e0204572 View
  8. Stephenson N, Hetherington E, Dodd S, Mathews A, Tough S. Mitigation of Participant Loss to Follow-Up Using Facebook: All Our Families Longitudinal Pregnancy Cohort. Journal of Medical Internet Research 2019;21(2):e10441 View
  9. Reuter K, Angyan P, Le N, MacLennan A, Cole S, Bluthenthal R, Lane C, El-Khoueiry A, Buchanan T. Monitoring Twitter Conversations for Targeted Recruitment in Cancer Trials in Los Angeles County: Protocol for a Mixed-Methods Pilot Study. JMIR Research Protocols 2018;7(9):e177 View
  10. Divall B, Spiby H. Online forums for data collection: ethical challenges from a study exploring women’s views of birth plans. Nurse Researcher 2019;27(2):26 View
  11. Stens O, Weisman M, Simard J, Reuter K. Insights From Twitter Conversations on Lupus and Reproductive Health: Protocol for a Content Analysis. JMIR Research Protocols 2020;9(8):e15623 View
  12. Reuter K, MacLennan A, Le N, Unger J, Kaiser E, Angyan P. A Software Tool Aimed at Automating the Generation, Distribution, and Assessment of Social Media Messages for Health Promotion and Education Research. JMIR Public Health and Surveillance 2019;5(2):e11263 View
  13. Katz M, Anderson P, Thompson M, Salmi L, Freeman-Daily J, Utengen A, Dizon D, Blotner C, Cooke D, Sparacio D, Staley A, Fisch M, Young C, Attai D. Organizing Online Health Content: Developing Hashtag Collections for Healthier Internet-Based People and Communities. JCO Clinical Cancer Informatics 2019;(3):1 View
  14. Bunyan A, Venuturupalli S, Reuter K. Expressed Symptoms and Attitudes Toward Using Twitter for Health Care Engagement Among Patients With Lupus on Social Media: Protocol for a Mixed Methods Study. JMIR Research Protocols 2021;10(5):e15716 View
  15. Gaia J, Wang X, Yoo C, Sanders G. Good News and Bad News About Incentives to Violate the Health Insurance Portability and Accountability Act (HIPAA): Scenario-Based Questionnaire Study. JMIR Medical Informatics 2020;8(7):e15880 View
  16. Min K, Song S, Min J. Topic Modeling of Social Networking Service Data on Occupational Accidents in Korea: Latent Dirichlet Allocation Analysis. Journal of Medical Internet Research 2020;22(8):e19222 View
  17. Macapagal K, Li D, Clifford A, Madkins K, Mustanski B. The CAN-DO-IT Model: a Process for Developing and Refining Online Recruitment in HIV/AIDS and Sexual Health Research. Current HIV/AIDS Reports 2020;17(3):190 View
  18. Robles T, Bordel B, Alcarria R, Sánchez-de-Rivera D. Enabling trustworthy personal data protection in eHealth and well-being services through privacy-by-design. International Journal of Distributed Sensor Networks 2020;16(5):155014772091211 View
  19. 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
  20. Hochheiser H, Valdez R. Human-Computer Interaction, Ethics, and Biomedical Informatics. Yearbook of Medical Informatics 2020;29(01):093 View
  21. Verbrugge J, Rumbaugh M, Cook L, Schulze J, Miller M, Heathers L, Arnedo V, Kuhl M, Foroud T. The Promise and Pitfalls of Facebook Advertising: a Genetic Counselor's Perspective. Journal of Genetic Counseling 2018;27(2):326 View
  22. Bay M. Social Media Ethics. ACM Transactions on Social Computing 2018;1(4):1 View
  23. Dol J, Tutelman P, Chambers C, Barwick M, Drake E, Parker J, Parker R, Benchimol E, George R, Witteman H. Health Researchers’ Use of Social Media: Scoping Review. Journal of Medical Internet Research 2019;21(11):e13687 View
  24. Loeb S, Katz M, Langford A, Byrne N, Ciprut S. Prostate cancer and social media. Nature Reviews Urology 2018;15(7):422 View
  25. Hokke S, Hackworth N, Bennetts S, Nicholson J, Keyzer P, Lucke J, Zion L, Crawford S. Ethical Considerations in Using Social Media to Engage Research Participants: Perspectives of Australian Researchers and Ethics Committee Members. Journal of Empirical Research on Human Research Ethics 2020;15(1-2):12 View
  26. Jerome R, Dunkel L, Kennedy N, Olson E, Pulley J, Bernard G, Wilkins C, Harris P. To end disease tomorrow, begin with trials today: Digital strategies for increased awareness of a clinical trials finder. Journal of Clinical and Translational Science 2019;3(4):190 View
  27. Gossec L, Kedra J, Servy H, Pandit A, Stones S, Berenbaum F, Finckh A, Baraliakos X, Stamm T, Gomez-Cabrero D, Pristipino C, Choquet R, Burmester G, Radstake T. EULAR points to consider for the use of big data in rheumatic and musculoskeletal diseases. Annals of the Rheumatic Diseases 2020;79(1):69 View
  28. Sedrak M, Attai D, George K, Katz M, Markham M. Integrating Social Media in Modern Oncology Practice and Research. American Society of Clinical Oncology Educational Book 2018;(38):894 View
  29. Balasubramanian A, Thirumavalavan N, Srivatsav A, Yu J, Hotaling J, Lipshultz L, Pastuszak A. An Analysis of Popular Online Erectile Dysfunction Supplements. The Journal of Sexual Medicine 2019;16(6):843 View
  30. Wiederhold B. Has the Internet Killed Privacy, or Has Our Definition Simply Changed?. Cyberpsychology, Behavior, and Social Networking 2018;21(7):403 View
  31. Akers L, Gordon J. Using Facebook for Large-Scale Online Randomized Clinical Trial Recruitment: Effective Advertising Strategies. Journal of Medical Internet Research 2018;20(11):e290 View
  32. Lauckner C, Desrosiers A, Muilenburg J, Killanin A, Genter E, Kershaw T. Social media photos of substance use and their relationship to attitudes and behaviors among ethnic and racial minority emerging adult men living in low‐income areas. Journal of Adolescence 2019;77(1):152 View
  33. Tseng H, Hung W, Hwang H, Chang I. Do Patients’ Privacy Concerns Influence Their Intention toward Medical Image Exchange Consent in Taiwan?. Healthcare 2020;8(1):14 View
  34. Böhmová L, Chudán D. Analyzing Social Media Data for Recruiting Purposes. Acta Informatica Pragensia 2018;7(1):4 View
  35. Rendina H, Mustanski B. Privacy, Trust, and Data Sharing in Web-Based and Mobile Research: Participant Perspectives in a Large Nationwide Sample of Men Who Have Sex With Men in the United States. Journal of Medical Internet Research 2018;20(7):e233 View
  36. Reuter K, Zhu Y, Angyan P, Le N, Merchant A, Zimmer M. Public Concern About Monitoring Twitter Users and Their Conversations to Recruit for Clinical Trials: Survey Study. Journal of Medical Internet Research 2019;21(10):e15455 View
  37. Bragard E, Fisher C, Curtis B. “They know what they are getting into:” Researchers confront the benefits and challenges of online recruitment for HIV research. Ethics & Behavior 2020;30(7):481 View
  38. Pratap A, Allred R, Duffy J, Rivera D, Lee H, Renn B, Areán P. Contemporary Views of Research Participant Willingness to Participate and Share Digital Data in Biomedical Research. JAMA Network Open 2019;2(11):e1915717 View
  39. Tan K, Killela M, Leckey J. Ethical Considerations of Social Media to Recruit Caregivers of Children With Cancer. Nursing Research 2021;70(1):67 View
  40. Bernier A, Taylor I. Rare disease data stewardship in Canada. FACETS 2020;5(1):836 View
  41. Nittas V, Puhan M, von Wyl V. Toward a Working Definition of eCohort Studies in Health Research: Narrative Literature Review. JMIR Public Health and Surveillance 2021;7(1):e24588 View
  42. Hirschprung R, Tayro S, Reznik E. Optimising technological literacy acquirement to protect privacy and security. Behaviour & Information Technology 2022;41(5):922 View
  43. Pritchard E. Using Facebook to Recruit People with Dwarfism: Pros and Pitfalls for Disabled Participants and Researchers. Scandinavian Journal of Disability Research 2021;23(1):85 View
  44. Farsi D. Social Media and Health Care, Part I: Literature Review of Social Media Use by Health Care Providers. Journal of Medical Internet Research 2021;23(4):e23205 View
  45. Stanger C, Kowatsch T, Xie H, Nahum-Shani I, Lim-Liberty F, Anderson M, Santhanam P, Kaden S, Rosenberg B. A Digital Health Intervention (SweetGoals) for Young Adults With Type 1 Diabetes: Protocol for a Factorial Randomized Trial. JMIR Research Protocols 2021;10(2):e27109 View
  46. Abshire D, McDonnell K, Donevant S, Corbett C, Tavakoli A, Felder T, Pinto B. Pivoting Nursing Research and Scholarship During the COVID-19 Pandemic. Nursing Research 2021;70(3):165 View
  47. Chen J, Wang Y. Social Media Use for Health Purposes: Systematic Review. Journal of Medical Internet Research 2021;23(5):e17917 View
  48. Bour C, Ahne A, Schmitz S, Perchoux C, Dessenne C, Fagherazzi G. The Use of Social Media for Health Research Purposes: Scoping Review. Journal of Medical Internet Research 2021;23(5):e25736 View
  49. Vassallo A, Jones A, Freeman B. Social media: frenemy of public health?. Public Health Nutrition 2022;25(1):61 View
  50. He K, Yao L, Zhang J, Li Y, Li C. Construction of Genealogical Knowledge Graphs From Obituaries: Multitask Neural Network Extraction System. Journal of Medical Internet Research 2021;23(8):e25670 View
  51. Reuter K. Social Media for Clinical Trial Recruitment: How Real is the Potential?. EMJ Innovations 2020:34 View
  52. Applequist J, Burroughs C, Merkel P, Rothenberg M, Trapnell B, Desnick R, Sahin M, Krischer J. Direct-to-Consumer Recruitment Methods via Traditional and Social Media to Aid in Research Accrual for Clinical Trials for Rare Diseases: Comparative Analysis Study. Journal of Medical Internet Research 2023;25:e39262 View
  53. Skeen S, Shaw Green S, Knopf A. Synthesizing Adaptive Digital Bioethics to Guide the Use of Interactive Communication Technologies in Adolescent Behavioral Medicine. Pediatric Clinics of North America 2022;69(4):739 View
  54. Rowan W, O'Connor Y, Lynch L, Heavin C. Comprehension, Perception, and Projection. Journal of Organizational and End User Computing 2021;33(6):1 View
  55. Jones J, Knox J, Meanley S, Yang C, Lounsbury D, Huang T, Bauermeister J, Gonzalez-Hernandez G, Frye V, Grov C, Patel V, Baral S, Sullivan P, Schwartz S. Explorations of the Role of Digital Technology in HIV-Related Implementation Research: Case Comparisons of Five Ending the HIV Epidemic Supplement Awards. JAIDS Journal of Acquired Immune Deficiency Syndromes 2022;90(S1):S226 View
  56. Bender J, Puri N, Salih S, D’Agostino N, Tsimicalis A, Howard A, Garland S, Chalifour K, Drake E, Marrato A, McKean N, Gupta A. Peer Support Needs and Preferences for Digital Peer Navigation among Adolescent and Young Adults with Cancer: A Canadian Cross-Sectional Survey. Current Oncology 2022;29(2):1163 View
  57. Anderson E. Sharing Research Opportunities on Personal Social Media Accounts and Fair Subject Selection. The American Journal of Bioethics 2021;21(10):40 View
  58. Darko E, Kleib M, Olson J. Social Media Use for Research Participant Recruitment: Integrative Literature Review. Journal of Medical Internet Research 2022;24(8):e38015 View
  59. Vallury K, Baird B, Miller E, Ward P. Going Viral: Researching Safely on Social Media. Journal of Medical Internet Research 2021;23(12):e29737 View
  60. Oliveira R, Barbosa M, Klein A, Kistmann V, Okimoto M. Privacidade por Definição e os aspectos de privacidade de dados pessoais no contexto do design inclusivo e de serviços. DAT Journal 2022;7(2):179 View
  61. Zimmermann B, Willem T, Bredthauer C, Buyx A. Ethical Issues in Social Media Recruitment for Clinical Studies: Ethical Analysis and Framework. Journal of Medical Internet Research 2022;24(5):e31231 View
  62. Hrincu V, An Z, Joseph K, Jiang Y, Robillard J, Rosen A. Dementia Research on Facebook and Twitter: Current Practice and Challenges. Journal of Alzheimer's Disease 2022;90(2):447 View
  63. Kogetsu A, Kato K. Framework and Practical Guidance for the Ethical Use of Electronic Methods for Communication With Participants in Medical Research. Journal of Medical Internet Research 2022;24(4):e33167 View
  64. Wentzell K, Walker H, Hughes A, Vessey J. Engaging Social Media Influencers to Recruit Hard-to-Reach Populations. Nursing Research 2021;70(6):455 View
  65. Marlowe J, Allen J. Relationality and online interpersonal research: Ethical, methodological and pragmatic extensions. Qualitative Social Work 2023;22(3):484 View
  66. Bamdad S, Finaughty D, Johns S. ‘Grey areas’: ethical challenges posed by social media-enabled recruitment and online data collection in cross-border, social science research. Research Ethics 2022;18(1):24 View
  67. Böhmová L, Pavlíček A. Innovations in Recruitment—Social Media. Advances in Science, Technology and Engineering Systems Journal 2021;6(6):88 View
  68. Salinas M. Are Your Participants Real? Dealing with Fraud in Recruiting Older Adults Online. Western Journal of Nursing Research 2023;45(1):93 View
  69. Reuter K, Angyan P, Le N, Buchanan T. Using Patient-Generated Health Data From Twitter to Identify, Engage, and Recruit Cancer Survivors in Clinical Trials in Los Angeles County: Evaluation of a Feasibility Study. JMIR Formative Research 2021;5(11):e29958 View
  70. Rodriguez C, Gopalakrishnan L, Del Cid M, Folk J, Yonek J, Tolou-Shams M. The Ethical Implications of Using Social Media to Engage and Retain Justice-Involved Youth in Behavioral Health Research. Journal of Empirical Research on Human Research Ethics 2021;16(4):356 View
  71. Bush J, Blackwell C. Social Media as a Recruitment Strategy with Transgender-Identified Individuals: Using an Ethical Lens to Direct Methodology. Journal of Transcultural Nursing 2022;33(5):603 View
  72. Lang S, Day K, Gallaher E, Jebeile H, Collins C, Baur L, Truby H. Participant recruitment for paediatric research using social media: A practical ‘how‐to’ guide for researchers. Nutrition & Dietetics 2023;80(4):338 View
  73. Zhang T. Ethics of ‘Counting Me In’: framing the implications of direct-to-patient genomics research. Journal of Medical Ethics 2024;50(1):45 View
  74. Bender J, Akinnibosun R, Puri N, D’Agostino N, Drake E, Tsimicalis A, Howard A, Garland S, Chalifour K, Gupta A. A comparison of the sociodemographic, medical, and psychosocial characteristics of adolescents and young adults diagnosed with cancer recruited in-person and online: A Canadian cross-sectional survey. DIGITAL HEALTH 2023;9 View
  75. Al-Zaman M, Khemka A, Zhang A, Rockwell G. The Defining Characteristics of Ethics Papers on Social Media Research: A Systematic Review of the Literature. Journal of Academic Ethics 2024;22(1):163 View
  76. Godfrey E, Koutsouris G. Is personality overlooked in educational psychology? Educational experiences of secondary-school students with introverted personality styles. Educational Psychology in Practice 2024;40(2):159 View
  77. Hwang K, Sivaratnam S, Azeredo R, Hashemi E, Jibb L, Lai Y. Exploring the use of social media and online methods to engage persons with lived experience and healthcare professionals in creating research agendas: Lessons from a pediatric cancer research priority-setting partnership. PLOS Digital Health 2024;3(1):e0000181 View
  78. Falemban R, Wilmut K, Hurst H, Purcell C. Roadside experiences of parents of children with developmental coordination disorder and/or attention deficit hyperactivity disorder. Frontiers in Human Neuroscience 2024;18 View
  79. Idnay B, Cordoba E, Ramirez S, Xiao E, Wood O, Batey D, Garofalo R, Schnall R. Social Marketing Perspective on Participant Recruitment in Informatics-Based Intervention Studies. AIDS and Behavior 2024;28(9):2836 View
  80. Harris J, Germain J, McCoy E, Schofield R, Anand A. Ethical guidance for conducting health research with online communities: A scoping review of existing guidance. PLOS ONE 2024;19(5):e0302924 View
  81. Soni H, Morrison H, Vasilev D, Ong T, Wilczewski H, Allen C, Hughes-Halbert C, Ritchie J, Narma A, Schiffman J, Ivanova J, Bunnell B, Welch B. User experience of a family health history chatbot: A quantitative analysis. Health Informatics Journal 2024;30(2) View
  82. Hussain M, Tewari D. Social media applications in biomedical research. Exploration of Digital Health Technologies 2024:167 View
  83. Khalpey Z, Kumar U, King N, Abraham A, Khalpey A. Large Language Models Take on Cardiothoracic Surgery: A Comparative Analysis of the Performance of Four Models on American Board of Thoracic Surgery Exam Questions in 2023. Cureus 2024 View
  84. Nowrozy R, Ahmed K, Kayes A, Wang H, McIntosh T. Privacy Preservation of Electronic Health Records in the Modern Era: A Systematic Survey. ACM Computing Surveys 2024;56(8):1 View
  85. Hrincu V, Roy K, Robillard J. Practical social media recommendations for dementia prevention researchers. Alzheimer's & Dementia: Translational Research & Clinical Interventions 2024;10(3) View
  86. Idnay B, Gordon E, Johnson A, Nestor J, Marder K, Weng C. Clinical researchers’ insights on key data for eligibility screening in clinical studies. Journal of Clinical and Translational Science 2024;8(1) View
  87. Wang Y, Liu P, Zhang Q. Knowledge, Attitudes, and Practices towards Acceptance of Health Science Information among WeChat Public Account Users: A Cross-Sectional Study. Disaster Medicine and Public Health Preparedness 2024;18 View

Books/Policy Documents

  1. Valdez R, Keim-Malpass J. Social Web and Health Research. View
  2. Kvalnes Ø. Moral Reasoning at Work. View
  3. Bohmova L, Pavlicek A, Doucek P. Information Systems: Research, Development, Applications, Education. View
  4. Kvalnes Ø. Digital Dilemmas. View
  5. Bendi M. When Translation Goes Digital. View
  6. Menvielle L, Ertz M, François J, Audrain-Pontevia A. Revolutions in Product Design for Healthcare. View