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Ethics in Infodemiology and Public Health 2.0

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Researchers and public health practitioners increasingly use Internet big data as data source. What are some of the ethical problems, and how should they be tackled? The author advocates the creation of a self-regulatory body of researchers, a code of conduct, and a notice/opt-out infrastructure, to avoid a public backlash against social media tracking/monitoring for public health, similar to the Facebook fiasko in 2014 (Cornell study).

Publié dans : Santé & Médecine
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Ethics in Infodemiology and Public Health 2.0

  1. 1. Gunther Eysenbach MD MPH Gunther Eysenbach MD MPH Professor Institute for Health Policy, Management and Evaluation, University of Toronto; Senior Scientist, Centre for Global eHealth Innovation, Editor-in-chief, Journal of Medical Internet Research Publisher, JMIR Publications Producer, Medicine 2.0 Conference Series Co-Director, Communication & Knowledge Translation, Techna Institute Toronto General Hospital, Canada Visiting Professor, Faculty of Behavioural Sciences University of Twente, The Netherlands Ethics in Infodemiology and Public Health 2.0 @eysenbach@eysenbach Presented at #Epicrowd2015 Recife, Brazil 26 Mar 2015 http://www.slideshare.net/eysen
  2. 2. www.jmir.org
  3. 3. JMIR has published >50 infodemiology studies http://www.jmir.org/themes/69
  4. 4. www.jmir.org
  5. 5. publichealth.jmir.org
  6. 6. An early paper on “infodemiology”: Internet searches correlate with Flu Eysenbach, 2006
  7. 7. Eysenbach, Am J Prev Med 2011
  8. 8. Eysenbach, Am J Prev Med 2011
  9. 9. Chew & Eysenbach. PloS One 2010; 5(11)
  10. 10. Clash of cultures • Industry practice – Users agree to Terms of Use giving widespread power companies to do what they like with the data – Users don’t read or understand TOS – A/B testing (split-testing, mini-RCTs) routinely done without users’ knowledge and consent – Tradeoff: Providing data vs getting free services • Research best practice – Inform users – Allow them to opt-out
  11. 11. The dilemma for journal editors Wealth of data in the hands of private corporations Best practice for research (informed consent/optout) often cannot be met
  12. 12. What about industry research?
  13. 13. Industry research committee • Independent from researcher • Preferably before research starts • Not just rubberstamping but giving meaningful feedback
  14. 14. Why do we need IRBs/Industry Ethics Committees • Harms vs benefit analysis • Should be done by 3rd party, not researchers themselves • Perceived harm / sense of wrongdoing FB study pushed all the wrong buttons: – “Alter emotional states” – “Secret experiment” (no disclosure/informed consent) – “Funded by the military” – Privacy concerns
  15. 15. N=1006, US population, poll conducted by JMIR Publications with Google Consumer Surveys 68% say FB should inform users and enable opt-out
  16. 16. Older people more likely to as for informed consent and opt-out
  17. 17. N=1002, US population, poll conducted by JMIR Publications with Google Consumer Surveys Even for randomized design and functionality tests only 10% “don’t mind” to be involved 24% want to opt out 10% don’t mind 14% were not aware
  18. 18. N=1003, US population, poll conducted by JMIR Publications with Google Consumer Surveys Companies and gov monitor tweets to gather intelligence 27% want to opt out 9% didn’t know 5% agree if it’s for public health 5% agree if it’s for government 4% agree if it’s for companies
  19. 19. Perhaps it's like undressing in front of an open window and then being outraged that someone watched, but that sense of outrage is real. Perhaps it is also time to revisit our ethical frameworks, which largely date to the predigital age, in the light of recent developments in data collection and storage on the Internet. Michael W. Ross, PhD, MD, MPH, is a professor of behavioral sciences at the Center for Health Promotion and Prevention Research in the School of Public Health at the University of Texas. He is also a member of the APA Committee on Human Research.
  20. 20. Eysenbach & Till, BMJ 2001
  21. 21. Eysenbach & Till, BMJ 2001
  22. 22. Conway. J Med Internet Res 2014 http://www.jmir.org/2014/12/e290
  23. 23. Conway M Ethical Issues in Using Twitter for Public Health Surveillance and Research: Developing a Taxonomy of Ethical Concepts From the Research Literature J Med Internet Res 2014;16(12):e290 URL: http://www.jmir.org/2014/12/e290
  24. 24. Cyberstudies / Public Health 2.0 • Passive Monitoring of tweets, social media and aggregated data monitoring • Qualitative research of Internet communities • Intervention studies such as altering the newsfeed • Participatory Surveillance Traditional Health Research • Passive Monitoring of EMR, OTC drug sales, and aggregated data monitoring • Qualitative research of consumer behavior • Intervention studies such as behavior change studies • Surveys Explicit Informed Consent Opt-out Implicit Informed Consent No Opt-out
  25. 25. Some crazy ideas (1/2) • Should there be an established voluntary standards for disclosure of experiments on websites – For example, companies such as FB should have a standard URL such as facebook.com/research disclosing current research (A/B/ testing) and providing opt-out options • Should responsible companies and researchers in this field agree on a code of conduct, provide notice and choice (opt-out infrastructure)
  26. 26. http://www.networkadvertising.org/choices/
  27. 27. Some questions (2/2) • Should the research community define and honor a standard controlled vocabulary (hashtags) so users can indicate if their tweets/status updates can/should be used for aggregate analysis and research
  28. 28. Conclusions • Only because information is “public”, or for honorable purposes such as public health, consumers may have issues with large-scale data analysis, esp. older people & for sensitive topics • It takes only one poorly framed study to create a media/consumer backlash • Consumer education as well as new “industry standards”, collaboration among researchers (role of funders?), and technical tools (opt- out/disclosure infrastructure) may be part of the answer
  29. 29. Gunther Eysenbach MD MPH Gunther Eysenbach MD MPH @eysenbach@eysenbach geysenba@gmail.com