Published on in Vol 19, No 6 (2017): June

Attitudes Toward the Ethics of Research Using Social Media: A Systematic Review

Attitudes Toward the Ethics of Research Using Social Media: A Systematic Review

Attitudes Toward the Ethics of Research Using Social Media: A Systematic Review

Authors of this article:

Su Golder 1 Author Orcid Image ;   Shahd Ahmed 1 Author Orcid Image ;   Gill Norman 2 Author Orcid Image ;   Andrew Booth 3 Author Orcid Image

Journals

  1. Tucker J, Pan S, Mathews A, Stein G, Bayus B, Rennie S. Ethical Concerns of and Risk Mitigation Strategies for Crowdsourcing Contests and Innovation Challenges: Scoping Review. Journal of Medical Internet Research 2018;20(3):e75 View
  2. Schäfer F, Faviez C, Voillot P, Foulquié P, Najm M, Jeanne J, Fagherazzi G, Schück S, Le Nevé B. Mapping and Modeling of Discussions Related to Gastrointestinal Discomfort in French-Speaking Online Forums: Results of a 15-Year Retrospective Infodemiology Study. Journal of Medical Internet Research 2020;22(11):e17247 View
  3. Ponce P, Peffer T, Molina A, Barcena S. Social creation networks for designing low income interfaces in programmable thermostats. Technology in Society 2020;62:101299 View
  4. Lenda M, Skórka P, Mazur B, Sutherland W, Tryjanowski P, Moroń D, Meijaard E, Possingham H, Wilson K. Effects of amusing memes on concern for unappealing species. Conservation Biology 2020;34(5):1200 View
  5. Astill Wright L, Golder S, Balkham A, McCambridge J. Understanding public opinion to the introduction of Minimum Unit Pricing in Scotland: a qualitative study using Twitter. (Preprint). JMIR Public Health and Surveillance 2018 View
  6. Xie J, Ke Q, Cheng Y, Everhart N. Meta-synthesis in Library & Information Science Research. The Journal of Academic Librarianship 2020;46(5):102217 View
  7. Greshake Tzovaras B, Angrist M, Arvai K, Dulaney M, Estrada-Galiñanes V, Gunderson B, Head T, Lewis D, Nov O, Shaer O, Tzovara A, Bobe J, Price Ball M. Open Humans: A platform for participant-centered research and personal data exploration. GigaScience 2019;8(6) View
  8. Kalyanam J, Mackey T. A Review of Digital Surveillance Methods and Approaches to Combat Prescription Drug Abuse. Current Addiction Reports 2017;4(4):397 View
  9. 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
  10. Gasteiger N, Grainger R, Day K. Arthritis-Related Support in a Social Media Group for Quilting Hobbyists: Qualitative Study. Interactive Journal of Medical Research 2018;7(2):e11026 View
  11. Taylor J, Pagliari C. Comprehensive scoping review of health research using social media data. BMJ Open 2018;8(12):e022931 View
  12. Golder S, Chiuve S, Weissenbacher D, Klein A, O’Connor K, Bland M, Malin M, Bhattacharya M, Scarazzini L, Gonzalez-Hernandez G. Pharmacoepidemiologic Evaluation of Birth Defects from Health-Related Postings in Social Media During Pregnancy. Drug Safety 2019;42(3):389 View
  13. Michaelidou N, Micevski M. Consumers' ethical perceptions of social media analytics practices: Risks, benefits and potential outcomes. Journal of Business Research 2019;104:576 View
  14. Gezgin U. An invitation to critical social science of big data: from critical theory and critical research to omniresistance. AI & SOCIETY 2020;35(1):187 View
  15. Astill Wright L, Golder S, Balkham A, McCambridge J. Understanding public opinion to the introduction of minimum unit pricing in Scotland: a qualitative study using Twitter. BMJ Open 2019;9(6):e029690 View
  16. Golder S, Scantlebury A, Christmas H. Understanding Public Attitudes Toward Researchers Using Social Media for Detecting and Monitoring Adverse Events Data: Multi Methods Study. Journal of Medical Internet Research 2019;21(8):e7081 View
  17. Ruxton G, Mulder T. Unethical work must be filtered out or flagged. Nature 2019;572(7768):171 View
  18. Young S. Social Media as a New Vital Sign: Commentary. Journal of Medical Internet Research 2018;20(4):e161 View
  19. Di Cara N, Boyd A, Tanner A, Al Baghal T, Calderwood L, Sloan L, Davis O, Haworth C. Views on social media and its linkage to longitudinal data from two generations of a UK cohort study. Wellcome Open Research 2020;5:44 View
  20. 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
  21. Sewalk K, Tuli G, Hswen Y, Brownstein J, Hawkins J. Using Twitter to Examine Web-Based Patient Experience Sentiments in the United States: Longitudinal Study. Journal of Medical Internet Research 2018;20(10):e10043 View
  22. Dennen V, Rutledge S. The Embedded Lesson Approach to Social Media Research: Researching Online Phenomena in an Authentic Offline Setting. TechTrends 2018;62(5):483 View
  23. 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
  24. Turner G. ‘Bizarre Sapphic midlife crisis’: (Re)thinking LGBTQ representation, age and mental health. Sexualities 2019;22(7-8):997 View
  25. Hochheiser H, Valdez R. Human-Computer Interaction, Ethics, and Biomedical Informatics. Yearbook of Medical Informatics 2020;29(01):093 View
  26. Goncalves M, Cornelius Smith E. Social media as a data gathering tool for international business qualitative research: opportunities and challenges. Journal of Transnational Management 2018;23(2-3):66 View
  27. Di Cara N, Boyd A, Tanner A, Al Baghal T, Calderwood L, Sloan L, Davis O, Haworth C. Views on social media and its linkage to longitudinal data from two generations of a UK cohort study. Wellcome Open Research 2020;5:44 View
  28. Ayers J, Caputi T, Nebeker C, Dredze M. Don’t quote me: reverse identification of research participants in social media studies. npj Digital Medicine 2018;1(1) View
  29. Ghouri F, Hollywood A, Ryan K. Urinary tract infections and antibiotic use in pregnancy - qualitative analysis of online forum content. BMC Pregnancy and Childbirth 2019;19(1) View
  30. Blandford A, Gibbs J, Newhouse N, Perski O, Singh A, Murray E. Seven lessons for interdisciplinary research on interactive digital health interventions. DIGITAL HEALTH 2018;4:205520761877032 View
  31. Stock N, Martindale A, Cunniffe C. #CleftProud. The Cleft Palate-Craniofacial Journal 2018;55(10):1339 View
  32. 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
  33. Paul M, Dredze M. Social Monitoring for Public Health. Synthesis Lectures on Information Concepts, Retrieval, and Services 2017;9(5):1 View
  34. Blankers M, van der Gouwe D, van Laar M. 4-Fluoramphetamine in the Netherlands: Text-mining and sentiment analysis of internet forums. International Journal of Drug Policy 2019;64:34 View
  35. Hemphill L, Hedstrom M, Leonard S. Saving social media data: Understanding data management practices among social media researchers and their implications for archives. Journal of the Association for Information Science and Technology 2021;72(1):97 View
  36. 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
  37. Bousquet C, Dahamna B, Guillemin-Lanne S, Darmoni S, Faviez C, Huot C, Katsahian S, Leroux V, Pereira S, Richard C, Schück S, Souvignet J, Lillo-Le Louët A, Texier N. The Adverse Drug Reactions from Patient Reports in Social Media Project: Five Major Challenges to Overcome to Operationalize Analysis and Efficiently Support Pharmacovigilance Process. JMIR Research Protocols 2017;6(9):e179 View
  38. 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
  39. D’Hotman D, Loh E, Savulescu J. AI-enabled suicide prediction tools: ethical considerations for medical leaders. BMJ Leader 2021;5(2):102 View
  40. Moore M, Trommer S. Critical Europeans in an Age of Crisis: Irish and Portuguese Protesters' EU Perceptions. JCMS: Journal of Common Market Studies 2021;59(2):316 View
  41. Wolffsohn J, Leteneux-Pantais C, Chiva-Razavi S, Bentley S, Johnson C, Findley A, Tolley C, Arbuckle R, Kommineni J, Tyagi N. Social Media Listening to Understand the Lived Experience of Presbyopia: Systematic Search and Content Analysis Study. Journal of Medical Internet Research 2020;22(9):e18306 View
  42. 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
  43. Bulcock A, Hassan L, Giles S, Sanders C, Nenadic G, Campbell S, Dixon W. Public Perspectives of Using Social Media Data to Improve Adverse Drug Reaction Reporting: A Mixed-Methods Study. Drug Safety 2021;44(5):553 View
  44. 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
  45. Skaik R, Inkpen D. Using Social Media for Mental Health Surveillance. ACM Computing Surveys 2021;53(6):1 View
  46. Stockler‐Ipsiroglu S, Potter B, Yuskiv N, Tingley K, Patterson M, van Karnebeek C. Developments in evidence creation for treatments of inborn errors of metabolism. Journal of Inherited Metabolic Disease 2021;44(1):88 View
  47. Stommel W, Rijk L. Ethical approval: none sought. How discourse analysts report ethical issues around publicly available online data. Research Ethics 2021;17(3):275 View
  48. Thelwall M, Thelwall S. A thematic analysis of highly retweeted early COVID-19 tweets: consensus, information, dissent and lockdown life. Aslib Journal of Information Management 2020;72(6):945 View
  49. Nicholas J, Onie S, Larsen M. Ethics and Privacy in Social Media Research for Mental Health. Current Psychiatry Reports 2020;22(12) View
  50. Prescott J, Rathbone A, Brown G. Online peer to peer support: Qualitative analysis of UK and US open mental health Facebook groups. DIGITAL HEALTH 2020;6:205520762097920 View
  51. 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
  52. Petersen M, Petersen I, Poulsen C, Nørgaard L. #studydrugs–Persuasive posting on Instagram. International Journal of Drug Policy 2021;95:103100 View
  53. Romero R, Young S. Ethical perspectives in sharing digital data for public health surveillance before and shortly after the onset of the Covid-19 pandemic. Ethics & Behavior 2022;32(1):22 View
  54. Borghouts J, Eikey E, Mark G, De Leon C, Schueller S, Schneider M, Stadnick N, Zheng K, Mukamel D, Sorkin D. Barriers to and Facilitators of User Engagement With Digital Mental Health Interventions: Systematic Review. Journal of Medical Internet Research 2021;23(3):e24387 View
  55. Lauberger J, Lühnen J. Social Media als Datenquelle für Studien in den Pflege- und Gesundheitswissenschaften. Pflege 2021;34(2):120 View
  56. Weerasinghe J, Morales K, Greenstadt R. “Because... I was told... so much”: Linguistic Indicators of Mental Health Status on Twitter. Proceedings on Privacy Enhancing Technologies 2019;2019(4):152 View
  57. Garett R, Young S. Digital Public Health Surveillance Tools for Alcohol Use and HIV Risk Behaviors. AIDS and Behavior 2021;25(S3):333 View
  58. 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
  59. 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
  60. Leonelli S, Lovell R, Wheeler B, Fleming L, Williams H. From FAIR data to fair data use: Methodological data fairness in health-related social media research. Big Data & Society 2021;8(1):205395172110103 View
  61. Chilman N, Morant N, Lloyd-Evans B, Wackett J, Johnson S. Twitter Users’ Views on Mental Health Crisis Resolution Team Care Compared With Stakeholder Interviews and Focus Groups: Qualitative Analysis. JMIR Mental Health 2021;8(6):e25742 View
  62. Fox K, Singh P. What are dental professionals posting on Facebook? A cross-sectional content analysis. Journal of Orthodontics 2022;49(2):185 View
  63. D’Souza R, Hooten W, Murad M. A Proposed Approach for Conducting Studies That Use Data From Social Media Platforms. Mayo Clinic Proceedings 2021;96(8):2218 View
  64. Buck A, Ralston D. I didn't sign up for your research study: The ethics of using “public” data. Computers and Composition 2021;61:102655 View
  65. Lotto M, Hanjahanja-Phiri T, Padalko H, Oetomo A, Butt Z, Boger J, Millar J, Cruvinel T, Morita P. Ethical principles for infodemiology and infoveillance studies concerning infodemic management on social media. Frontiers in Public Health 2023;11 View
  66. Sufi F. A New Social Media-Driven Cyber Threat Intelligence. Electronics 2023;12(5):1242 View
  67. Kettrey H, Davis A, Liberman J. “Consent Is F#@king Required”: Hashtag Feminism Surrounding Sexual Consent in a Culture of Postfeminist Contradictions. Social Media + Society 2021;7(4):205630512110629 View
  68. Rashi T, Yom-Tov E. Ethics of Medical Archival Internet Research Data. Journal of Medical Internet Research 2023;25:e43754 View
  69. Cox L, Gibbs N, Turnock L. “Emerging anabolic androgenic steroid markets; the prominence of social media”. Drugs: Education, Prevention and Policy 2024;31(2):257 View
  70. Sufi F, Razzak I, Khalil I. Tracking Anti-Vax Social Movement Using AI-Based Social Media Monitoring. IEEE Transactions on Technology and Society 2022;3(4):290 View
  71. Grocott L, Mair A, Galione J, Armey M, Huang J, Nugent N. Days with and without self‐injurious thoughts and behaviors: Impact of childhood maltreatment on adolescent online social networking. Journal of Adolescence 2022;94(5):748 View
  72. Orchowski L, Grocott L, Bogen K, Ilegbusi A, Amstadter A, Nugent N. Barriers to Reporting Sexual Violence: A Qualitative Analysis of #WhyIDidntReport. Violence Against Women 2022;28(14):3530 View
  73. Fadda M, Sykora M, Elayan S, Puhan M, Naslund J, Mooney S, Albanese E, Morese R, Gruebner O. Ethical issues of collecting, storing, and analyzing geo-referenced tweets for mental health research. DIGITAL HEALTH 2022;8:205520762210925 View
  74. Garett R, Young S. Ethical Views on Sharing Digital Data for Public Health Surveillance: Analysis of Survey Data Among Patients. Frontiers in Big Data 2022;5 View
  75. Amălăncei B, Tzafilkou K, Mâță L, Cîrtiță-Buzoianu C. Measuring Romanian Students’ Attitude towards the Ethical Use of Social Networks. Sustainability 2022;14(17):10907 View
  76. Rothschild N, Aharony N. Motivations for sharing personal information and self-disclosure in public and private Facebook groups of mentally ill people. Aslib Journal of Information Management 2023;75(6):1079 View
  77. Hair N, Akdevelioglu D, Clark M. The philosophical and methodological guidelines for ethical online ethnography. International Journal of Market Research 2023;65(1):12 View
  78. Takats C, Kwan A, Wormer R, Goldman D, Jones H, Romero D. Ethical and Methodological Considerations of Twitter Data for Public Health Research: Systematic Review. Journal of Medical Internet Research 2022;24(11):e40380 View
  79. Syntosi A, Felizzi F, Bouchet C. A Social Media Listening Study to Understand the Unmet Needs and Quality of Life in Adult and Pediatric Amblyopia Patients. Ophthalmology and Therapy 2022;11(6):2183 View
  80. Wong L, Lin Y, Alias H, Bakar S, Zhao Q, Hu Z. COVID-19 Anti-Vaccine Sentiments: Analyses of Comments from Social Media. Healthcare 2021;9(11):1530 View
  81. van der Zanden T, Schouten A, Mos M, Krahmer E, Fronzetti Colladon A. Originality in online dating profile texts: How does perceived originality affect impression formation and what makes a text original?. PLOS ONE 2022;17(10):e0274860 View
  82. Kruopštaitė I, Šupa M. Ethics in criminological research of online communities. Kriminologijos studijos 2020;8:8 View
  83. Sadaf S, Siitonen M. “A Shameless Ideology of Shameless Women”: Positioning the Other in Social Media Discourse Surrounding a Women’s Rights Movement in Pakistan. Social Media + Society 2022;8(1):205630512210869 View
  84. Liske C, Tutticci N, Diño M. Joy at work and vocational identity during COVID‐19: A structural equation model. Journal of Nursing Scholarship 2023;55(5):1058 View
  85. Choi E, Becker H, Kim S. Unmet needs in adolescents and young adults with cancer: A mixed-method study using social media. Journal of Pediatric Nursing 2022;64:31 View
  86. Salim N, Jubair F, Hassona Y, Izriqi S, Al-Fuqaha’a D, Nuvvula S. Esthetic Dentistry on Twitter: Benefits and Dangers. International Journal of Dentistry 2021;2021:1 View
  87. Choi E, Becker H, Kim S. A Blog Text Analysis to Explore Psychosocial Support in Adolescents and Young Adults With Cancer. Cancer Nursing 2023;46(2):143 View
  88. Farsi D, Martinez-Menchaca H, Ahmed M, Farsi N. Social Media and Health Care (Part II): Narrative Review of Social Media Use by Patients. Journal of Medical Internet Research 2022;24(1):e30379 View
  89. Jacobson J, Gomes Rinaldi A, Rudkowski J. Decoding the employee influencer on social media: applying Taylor’s six segment message strategy wheel. European Journal of Marketing 2023;57(1):29 View
  90. Winter C, Gundur R. Challenges in gaining ethical approval for sensitive digital social science studies. International Journal of Social Research Methodology 2024;27(1):31 View
  91. Zhang T, Schoene A, Ji S, Ananiadou S. Natural language processing applied to mental illness detection: a narrative review. npj Digital Medicine 2022;5(1) View
  92. Chua S. Navigating conflict between research ethics and online platform terms and conditions: a reflective account. Research Ethics 2022;18(1):39 View
  93. Schmidt A, Rodriguez-Esteban R, Gottowik J, Leddin M. Applications of quantitative social media listening to patient-centric drug development. Drug Discovery Today 2022;27(5):1523 View
  94. Wang N, Clowdus Z, Sealander A, Stern R. Geonews: timely geoscience educational YouTube videos about recent geologic events. Geoscience Communication 2022;5(2):125 View
  95. 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
  96. Sufi F, Alsulami M. A Novel Method of Generating Geospatial Intelligence from Social Media Posts of Political Leaders. Information 2022;13(3):120 View
  97. Sufi F. A decision support system for extracting artificial intelligence-driven insights from live twitter feeds on natural disasters. Decision Analytics Journal 2022;5:100130 View
  98. Freeman T, Rodriguez-Esteban R, Gottowik J, Yang X, Erpenbeck V, Leddin M. A Neural Network Approach for Understanding Patient Experiences of Chronic Obstructive Pulmonary Disease (COPD): Retrospective, Cross-sectional Study of Social Media Content. JMIR Medical Informatics 2021;9(11):e26272 View
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  101. Molenaar A, Jenkins E, Brennan L, Lukose D, McCaffrey T. The use of sentiment and emotion analysis and data science to assess the language of nutrition-, food- and cooking-related content on social media: a systematic scoping review. Nutrition Research Reviews 2023:1 View
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Books/Policy Documents

  1. Mondal S, Rehena Z. Internet of Things Based Smart Healthcare. View
  2. Ingram W, Khanna R, Weston C. Mental Health Informatics. View
  3. Wongkoblap A, Vadillo M, Curcin V. Mental Health in a Digital World. View
  4. Mersel A, Carles S. Treatment Dilemmas for Vulnerable Patients in Oral Health. View
  5. Same'e S, Anmary A. Reviving and Re-Writing Ethics in Social Research For Commoning the Community. View