Ethical Research Protocols for Social Media Health Research

Social media have transformed data-driven research in political science, the social sciences, health, and medicine. Since health research often touches on sensitive topics that relate to ethics of treatment and patient privacy, similar ethical considerations should be acknowledged when using social media data in health research. While much has been said regarding the ethical considerations of social media research, health research leads to an additional set of concerns. We provide practical suggestions in the form of guidelines for researchers working with social media data in health research. These guidelines can inform an IRB proposal for researchers new to social media health research.

[1]  D. Rothman,et al.  The institutional review board and beyond: future challenges to the ethics of human experimentation. , 1995, The Milbank quarterly.

[2]  S. Eckstein.  The Belmont Report: ethical principles and guidelines for the protection of human subjects of research , 2003 .

[3]  Amy Bruckman,et al.  “Go Away”: Participant Objections to Being Studied and the Ethics of Chatroom Research , 2004, Inf. Soc..

[4]  Lawrence O. Gostin,et al.  Code of Federal Regulations Title 45: Public Welfare Part 46: Protection of Human Subjects , 2007 .

[5]  Sarah J L Edwards,et al.  Differences between research ethics committees , 2007, International Journal of Technology Assessment in Health Care.

[6]  Vitaly Shmatikov,et al.  Robust De-anonymization of Large Sparse Datasets , 2008, 2008 IEEE Symposium on Security and Privacy (sp 2008).

[7]  Daniele Quercia,et al.  Our Twitter Profiles, Our Selves: Predicting Personality with Twitter , 2011, 2011 IEEE Third Int'l Conference on Privacy, Security, Risk and Trust and 2011 IEEE Third Int'l Conference on Social Computing.

[8]  John D. Burger,et al.  Discriminating Gender on Twitter , 2011, EMNLP.

[9]  Lyle H. Ungar,et al.  Identifying potential adverse effects using the web: A new approach to medical hypothesis generation , 2011, J. Biomed. Informatics.

[10]  Johan Bollen,et al.  Twitter mood predicts the stock market , 2010, J. Comput. Sci..

[11]  Mark Dredze,et al.  You Are What You Tweet: Analyzing Twitter for Public Health , 2011, ICWSM.

[12]  Isabell M. Welpe,et al.  Election Forecasts With Twitter , 2011 .

[13]  Fabian Neuhaus,et al.  AGILE ETHICS FOR MASSIFIED RESEARCH AND VISUALIZATION , 2012 .

[14]  R. Mckee.  Ethical issues in using social media for health and health care research. , 2013, Health policy.

[15]  Lilian Mitrou,et al.  Insiders Trapped in the Mirror Reveal Themselves in Social Media , 2013, NSS.

[16]  E. Vayena,et al.  Caught in the Web: Informed Consent for Online Health Research , 2013, Science Translational Medicine.

[17]  Megha Agrawal,et al.  Characterizing Geographic Variation in Well-Being Using Tweets , 2013, ICWSM.

[18]  Fabio Pianesi,et al.  Workshop on Computational Personality Recognition: Shared Task , 2013, Proceedings of the International AAAI Conference on Web and Social Media.

[19]  Dan O'Connor,et al.  The Apomediated World: Regulating Research When Social Media Has Changed Research , 2013, Journal of Law, Medicine & Ethics.

[20]  Philip Resnik,et al.  Using Topic Modeling to Improve Prediction of Neuroticism and Depression in College Students , 2013, EMNLP.

[21]  Cognitive Board on Behavioral.  Proposed Revisions to the Common Rule for the Protection of Human Subjects in the Behavioral and Social Sciences , 2014 .

[22]  Jeffrey T. Hancock,et al.  Experimental evidence of massive-scale emotional contagion through social networks , 2014, Proceedings of the National Academy of Sciences.

[23]  Steve Wicinski.  Code of Federal Regulations Search Form , 2014 .

[24]  Mike Conway.  Ethical Issues in Using Twitter for Public Health Surveillance and Research: Developing a Taxonomy of Ethical Concepts From the Research Literature , 2014, Journal of medical Internet research.

[25]  Mark Dredze,et al.  From ADHD to SAD: Analyzing the Language of Mental Health on Twitter through Self-Reported Diagnoses , 2015, CLPsych@HLT-NAACL.

[26]  Maarten Sap,et al.  The role of personality, age, and gender in tweeting about mental illness , 2015, CLPsych@HLT-NAACL.

[27]  Kevin A Padrez,et al.  Linking social media and medical record data: a study of adults presenting to an academic, urban emergency department , 2015, BMJ Quality & Safety.

[28]  Mark Dredze,et al.  Shared Task : Depression and PTSD on Twitter , 2015 .

[29]  Mike Conway,et al.  Ethical issues in using Twitter for population-level depression monitoring: a qualitative study , 2016, BMC Medical Ethics.

[30]  Mark Dredze,et al.  Discovering Shifts to Suicidal Ideation from Mental Health Content in Social Media , 2016, CHI.

[31]  Juliana Freire,et al.  Anonymizing NYC Taxi Data: Does It Matter? , 2016, 2016 IEEE International Conference on Data Science and Advanced Analytics (DSAA).

[32]  Peter Szolovits,et al.  MIMIC-III, a freely accessible critical care database , 2016, Scientific Data.

[33]  Holly Hedegaard,et al.  Increase in Suicide in the United States, 1999-2014. , 2016, NCHS data brief.