The apomediated world: Regulating research when social media has changed research

Journal of Law, Medicine and Ethics

Volumn 41, Issue 2, 2013, Pages 470-483

  O'Connor, Dan ^a  

^a JOHNS HOPKINS UNIVERSITY   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CONFIDENTIALITY; ETHICS; HUMAN; LEGAL ASPECT; MEDICAL RESEARCH; PATIENT SELECTION; RESEARCH SUBJECT; SOCIAL MEDIA; UNITED STATES;

BIOMEDICAL RESEARCH; CONFIDENTIALITY; HUMANS; PATIENT SELECTION; RESEARCH SUBJECTS; SOCIAL MEDIA; UNITED STATES;

EID: 84879701869     PISSN: 10731105     EISSN: 1748720X     Source Type: Journal    
DOI: 10.1111/jlme.12056     Document Type: Article

References (31)

1. G. Eysenbach, "Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness, " Journal of Medical Internet Research 10, no. 3 (2008): e22, available at (last visited April 11, 2013). See also D. O'Connor, "Apomediation and Ancillary Care: Researchers' Responsibilities in Health-Related Online Communities, "IJIRE 3, no. 1 (2010): 87-103.
2. M. Swan, "DIYgenomics Crowdsourced Health Research Studies: PersonalWellness and Preventive Medicine through Collective Intelligence, " AAAI Spring Symposium Series, North America (March 2012): 54-59, available at (last visited Apr 22, 2013).
3. G. Cuda-Kroen, "Patients Find Each Other Online to Jump-Start Medical Research, " Shots: The NPR Health Blog, May 28, 2012, available at (last visited April 11, 2013); A. Dockser Marcus, "ALS Study Shows Social Media's Value as a Research Tool, "Wall Street Journal, April 25, 2011, available at (last visited April 11, 2013); L. Zamosky, "Patients' Use of Social Media Spurs More Clinical Research, "iHealthBeat, September 17, 2012, available at (last visited April 11, 2013); L. Steakley, "Countdown to Medicine X: Sourcing Data for Clinical Research from Online Social Networks, "Scope, September 26, 2012, available at (last visited April 11, 2013).
4. Several of the public commentaries on the proposed changes do mention social media platforms, particularly Facebook. I address these commentaries later in the paper.
5. F. Fornai et al., "Lithium Delays Progression of Amyotrophic Lateral Sclerosis, " Proceedings of the National Academy of Sciences of the United States of America 105, no. 6 (February 12, 2008): 2052-2057.
6. P. Wicks, T. Vaughn, M. Massagli, and J. Haywood, "Accelerated Clinical Discovery Using Self-Reported Patient Data Collected Online and a Patient-Matching Algorithm, " Nature Biotechnology 29, no. 5 (2011): 411-414.
7. E. Verstraate et al., "Lithium Lacks Effect on Survival in Amyotrophic Lateral Sclerosis: A Phase IIb Randomised Sequential Trial, " Journal of Neurology, Neurosurgery and Psychiatry 83, no. 5 (May 2012): 557-564.
8. Blue Chip Patient Recruitment, Engaging E-Patients in Clinical Trials Through Social Media (2011), available at (last visitedApr 22, 2013); N. Morrison, "Blue Chip Gives Social Networking in Patient Recruitment the Thumbs Up, " Outsourcing-Pharma website, available at (last visited April 11, 2013).
9. See J. Howe, "Crowdsourcing: A Definition, "available at (last visited April 11, 2013). E. Estellés-Arolas and Fernando González-Ladrón-de-Guevara, "Towards and Integrated Crowdsourcing Definition, "Journal of Information Science 38, no. 2 (April 2012): 189-200.
10. A. W. Armstrong, C. T. Harskamp, S. Cheeny, J. Wu, and C. W. Schupp, "Power of Crowdsourcing: Novel Methods of Data Collection in Psoriasis and Psoriatic Arthritis, " Journal of the American Academy of Dermatology 67, no. 6 (December 2012): 1273-1281; M. N. Kamel Boulos et al., "Crowdsourcing, Citizen Sensing and Sensor Web Technologies for Public and Environmental Health Surveillance and Crisis Management: Trends, OGC Standards and Application Examples, "International Journal of Health Geographics 10, no. 67 (December 21, 2011), available at (last visited April 11, 2013); T. S. Behrend, D. J. Sharek, A. W. Meade, and E. N. Wiebe, "The Viability of Crowdsourcing for Survey Research, "Behavior Research Methods 43, no. 3 (September 2011): 800-813.
11. M. Swan, "Crowdsourced Health Research Studies: An Important Emerging Complement to Clinical Trials in the Public Health Research Ecosystem, " Journal of Medical Internet Research 14, no. 2 (March-April 2012): e46, available at (last visited April 11, 2013).
12. M. Swan, K. Hathaway, C. Hogg, R. McCauley, and A. Volrath, "Citizen Science Genomics as a Model for Crowdsourced Preventive Medicine Research, " Journal of Participatory Medicine 2 (December 23, 2010), available at (last visited April 11, 2013).
13. Code of Federal Regulations TITLE 45: PUBLIC WELFARE: DEPARTMENT OF HEALTH AND HUMAN SERVICES: PART 45. PROTECTION OF HUMAN SUBJECTS, 46.406 (January 15, 2009), available at (last visited April 11, 2013.
14. Code of Federal Regulations Title 45: Public Welfare: Department of Health and Human Services: Part 45. Protection of Human Subjects, 46.101 (January 15, 2009), available at (last visited April 11, 2013).
15. M. Katz, "PatientsLikeMe: Connecting People, Conducting Human Subjects Research, " Mayo Clinic Center for Social Media, September 12, 2011, available at (last visited April 11, 2013).
16. See D. J. Rothman, Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making (New York: BasicBooks, 1991); A. R. Jonsen, The Birth of Bioethics (New York: Oxford University Press, 1998).
17. Blue Chip Patient Recruitment, Engaging E-Patients in Clinical Trials Through Social Media (2011), available at (last visited April 22, 2013).
18. PatientsLikeMe, "Clinical Trial Awareness, "PatientsLikeMe, available at (last visited April 11, 2013).
19. See Inspire, available at (last visited April 11, 2013); Army of Women, available at (last visited April 11, 2013); TrialX, available at (last visited January 22, 2013).
20. N. Morrison, "Blue Chip Gives Social Networking in Patient Recruitment the Thumbs Up, " Outsourcing-Pharma website, available at (last visited April 11, 2013).
21. Some questions have been addressed in the following: S. Soo-Jin Lee and L. Crawley, "Research 2.0: Social Networking and Direct-to-Consumer (DTC) Genomics, "American Journal of Bioethics 9, nos. 6-7 (2009): 35-44; D. O'Connor, "Apomediation and the Significance of Social Networking, "American Journal of Bioethics 9, nos. 6-7 (2009): 25-27.
22. A. Dockser Marcus, "When Research Gets Really Personal: The DIY Clinical Trial, " Wall Street Journal, March 30, 2012, available at (last visited April 11, 2013).
23. K. C. Chretien, S. Ryan Greysen, J.-P. Chretien, and T. Kind, "Online Posting of Unprofessional Content by Medical Students, " Journal of the American Medical Association 302, no. 12 (2009): 1309-1315; K. Torvik and C. Singbeil, "What Goes Online Is on the Record, "Canadian Nurse 104, no. 5 (2008): 21; J. S. Guseh II, R. W. Brendel, and D. H. Brendel, "Medical Professionalism in the Age of Online Social Networking, "Journal of Medical Ethics 35, 9(2009): 584-586.
24. G. J. Annas, "Medical Privacy and Medical Research - Judging the New Federal Regulations, " New England Journal of Medicine 346, 3(2002): 216-220.
25. U.S. Department of Health and Human Services, available at (last visited April 11, 2013).
26. I. Paul, "Facebook Users Don't Trust Site on Privacy Issues, " PCWorld, May 15, 2012, available at (last visited April 11, 2013); K. J. O'Brien, "Germans Reopen Investigation on Facebook Privacy, "New York Times, August 15, 2012, available at (last visited April 11, 2013); C. Mui, "Facebook's Privacy Issues Are Even Deeper Than We Knew, "Forbes, August 8, 2011, available at (last visited April 11, 2013); T. Thornhill, "Google Will Know More about You Than Your Partner, "Daily Mail, March 2, 2012, available at (last visited April 11, 2013); S. Gaudin, "Google Privacy Change Draws 'Firestorm, '"ComputerWorld, March 2, 2012, available at (last visited April 11, 2013).
27. All comments are available through (last visited April 11, 2013).
28. For example: C. Chew and G. Eysenbach, "Pandemics in the Age of Twitter: Content Analysis of Tweets during the 2009 H1N1 Outbreak, "PLoS One, 5, no. 11 (2010): e14118, available at (last visited April 11, 2013); A. Signorini, A. M. Segre, and P. M. Polgreen, "The Use of Twitter to Track Levels of Disease Activity and Public Concern in the U.S. during the Influenza A H1N1 Pandemic, "PLoS ONE 6, no. 5 (2011): e19467, available at (last visited April 11, 2013).
29. All comments are available through (last visited April 11, 2013).
30. Interestingly, social and behavioral scientists have seen this shift as a way to avoid IRB scrutiny, arguing in comment #1102 that Facebook updates are "publicly available" and thus any research into them (or similarly 'public' social media content) should qualify for expedited review. See: American Educational Research Association et al., Social and Behavioral Science White Paper on Advanced Notice for Proposed Rulemaking (ANPRM) Federal Register 44512-531 (July 26, 2011), ID Docket HHS-OPHS-2011-0005: 12, available at (last visited April 11, 2013).
31. See, for example, A. Gawande, "A Lifesaving Checklist, "New York Times, December 30, 2007; S. Nassir Ghaemi and F. K. Goodwin, "The Ethics of Clinical Innovation in Psychopharmacology: Challenging Traditional Bioethics, "Philosophy, Ethics and Humanities in Medicine 2, no. 26 (2007), available at (last visited April 11, 2013); Z. M. Schrag, Ethical Imperialism: Institutional Review Boards and the Social Sciences, 1965-2009 (Baltimore: Johns Hopkins University Press, 2010).