On Wednesday, July 21, 2010, I will be presenting in front of the Secretary’s Advisory Committee on Human Research Protections (SACHRP), part of the Office for Human Research Protections in the United States Department of Health and Human Services (HHS). My presentation will focus on how Web 2.0 tools, environments, and experiences are creating new conceptual gaps in our understanding of privacy, anonymity/identifiability, consent, and harm.

1. Research Ethics in the 2.0 Era:Conceptual Gaps for Ethicists, Researchers, IRBs Michael Zimmer, PhD School of Information Studies University of Wisconsin-Milwaukee zimmerm@uwm.edu http://michaelzimmer.org Secretary’s Advisory Committee on Human Research Protections July 21, 2010

2. My Perspective Approaching the problem of “The Internet in Human Subjects Research” from the field of information ethics Focus on how 2.0 tools, environments, and experiences are creating new conceptual gaps in our understanding of: Privacy Anonymity vs. Identifiability Consent Harm

3. Illuminating Cases Tastes, Ties, and Time (T3) Facebook data release Pete Warden’s harvesting (and proposed release) of public Facebook profiles Question of consent for using “public” Twitter streams Library of Congress archiving “public” Twitter streams

4. T3 Facebook Project Harvard-based Tastes, Ties, and Time (T3) research project sought to understand social network dynamics of large groups of students Solution: Work with Facebook & an “anonymous” university to harvest the Facebook profiles of an entire cohort of college freshmen Repeat each year for their 4-year tenure Co-mingle with other University data (housing, major, etc) Coded for race, gender, political views, cultural tastes, etc

5. T3 Data Release As an NSF-funded project, the dataset was made publicly available First phase released September 25, 2008 One year of data (n=1,640) Prospective users must submit application to gain access to dataset Detailed codebook available for anyone to access

6. “Anonymity” of the T3 Dataset “All the data is cleaned so you can’t connect anyone to an identity” But dataset had unique cases (based on codebook) If we could identify the source university, individuals could potentially be identified Took me minimal effort to discern the source was Harvard The anonymity (and privacy) of subjects in the study might be in jeopardy….

7. T3 Good-Faith Efforts to Protect Subject Privacy Only those data that were accessible by default by each RA were collected Removing/encoding of “identifying” information Tastes & interests (“cultural footprints”) will only be released after “substantial delay” To download, must agree to “Terms and Conditions of Use” statement Reviewed & approved by Harvard’s IRB Zimmer, M. (2010). “But the data is already public”: on the ethics of research in Facebook. Ethics & Information Technology

8. 1. Only those data that were accessible by default by each RA were collected “We have not accessed any information not otherwise available on Facebook” False assumption that because the RA could access the profile, it was “publicly available” RAs were Harvard graduate students, and thus part of the the “Harvard network” on Facebook

9. 2. Removing/encoding of “identifying” information “All identifying information was deleted or encoded immediately after the data were downloaded” While names, birthdates, and e-mails were removed… Various other potentially “identifying” information remained Ethnicity, home country/state, major, etc AOL/NetFlix cases taught us how nearly any data could be potentially “identifying”

10. 3. Tastes & interests will only be released after “substantial delay” T3 researchers recognize the unique nature of the cultural taste labels: “cultural fingerprints” Individuals might be uniquely identified by what they list as a favorite book, movie, restaurant, etc. Steps taken to mitigate this privacy risk: In initial release, cultural taste labels assigned random numbers Actual labels to be released after a “substantial delay” – 3 years later

11. 3. Tastes & interests will only be released after “substantial delay” But, is 3 years really a “substantial delay”? Subjects’ privacy expectations don’t expire after artificially-imposed timeframe Datasets like these are often used years after their initial release, so the delay is largely irrelevant T3 researchers also will provide immediate access on a “case-by-case” basis No details given, but seemingly contradicts any stated concern over protecting subject privacy

12. 4. “Terms and Conditions of Use” statement I will use the dataset solely for statistical analysis and reporting of aggregated information, and not for investigation of specific individuals…. I will produce no links…among the data and other datasets that could identify individuals… I will not knowingly divulge any information that could be used to identify individual participants I will make no use of the identity of any person or establishment discovered inadvertently.

13. 4. “Terms and Conditions of Use” statement The language within the TOS clearly acknowledges the privacy implications of the T3 dataset Might help raise awareness among potential researchers; appease IRB But “click-wrap” agreements are notoriously ineffective to affect behavior Unclear how the T3 researchers specifically intend to monitor or enforce compliance Already been one research paper that might violate the TOS

14. 5. Reviewed & Approved by IRB “Our IRB helped quite a bit as well. It is their job to insure that subjects’ rights are respected, and we think we have accomplished this” “The university in question allowed us to do this and Harvard was on board because we don’t actually talk to students, we just accessed their Facebook information”

15. 5. Reviewed & Approved by IRB For the IRB, downloading Facebook profile information seemed less invasive than actually talking with subjects… Did IRB know unique, personal, and potentially identifiable information was present in the dataset? …and consent was not needed since the profiles were “freely available” But RA access to restricted profiles complicates this; did IRB contemplate this? Is putting information on a social network “consenting” to its use by researchers?

16. T3 Good-Faith Efforts to Protect Subject Privacy Only those data that were accessible by default by each RA were collected Removing/encoding of “identifying” information Tastes & interests (“cultural footprints”) will only be released after “substantial delay” To download, must agree to “Terms and Conditions of Use” statement Reviewed & approved by Harvard’s IRB Zimmer, M. (2010). “But the data is already public”: on the ethics of research in Facebook. Ethics & Information Technology

17. Illuminating Cases Tastes, Ties, and Time (T3) Facebook data release Pete Warden’s harvesting (and proposed release) of public Facebook profiles Question of consent for using “public” Twitter streams Library of Congress archiving “public” Twitter streams

18. Pete Warden Facebook Dataset Exploited flaw in FB’s architecture to access and harvest public profiles to 215 million users (without needing to login) Planned to release entire dataset – with all personal information intact – to academic community Would it be acceptable to use this dataset? Users made data public, but did they expect it to be harvested by bots, aggregated, and made available as raw data? http://michaelzimmer.org/2010/02/12/why-pete-warden-should-not-release-profile-data-on-215-million-facebook-users/

19. Harvesting Public Twitter Streams Is it ethical for researchers to follow and systematically capture public Twitter streams without first obtaining specific, informed consent by the subjects? Are tweets publications, or utterances? Are you reading a text, or recording a discussion? What are users’ expectations to how their tweets are being found & used? What if user later changes their preferences, or deletes tweets, etc http://michaelzimmer.org/2010/02/12/is-it-ethical-to-harvest-public-twitter-accounts-without-consent/

20. LOC Archive of Public Tweets Library of Congress will archive all public tweets 6 month delay, restricted access to researchers Open questions: Can users opt-out from being in permanent archive? Can users delete tweets from archive? Will geolocational and other profile data be included? What about a public tweet that is re-tweeting a private one?

21. Illuminating Cases Tastes, Ties, and Time (T3) Facebook data release Pete Warden’s harvesting (and proposed release) of public Facebook profiles Question of consent for using “public” Twitter streams Library of Congress archiving “public” Twitter streams

22. Conceptual Gaps Focus on how 2.0 tools, environments, and experiences are creating new conceptual gaps in our understanding of: Privacy Anonymity vs. Identifiability Consent Harm Conceptual gaps lead to policy vacuums that need to be addressed…

23. Conceptual Gap: Privacy Presumption that because subjects make information available on Facebook/Twitter, they don’t have an expectation of privacy Ignores contextual nature of sharing Ignores whether users really understand their privacy settings Going forward… Recognize the strict dichotomy of public/private doesn’t apply in the 2.0 world Consider Helen Nissenbaum’s theory of “contextual integrity” as more fitting rubric Strive to consult privacy scholars on projects & reviews

24. Conceptual Gap: Anonymity vs. Identifiability Presumption that stripping names & other obvious identifiers provides anonymity Ignores how anything can potentially identifiable information and become the “missing link” to re-identify an entire dataset Going forward Recognize “personally identifiable information” is an imperfect concept Consider EU’s protection of any data “potentially linkable” to an identity “Anonymous” datasets are not achievable and provides false sense of protection Paul Ohm, “Broken Promises of Privacy”

25. Conceptual Gap: Consent Presumption that because something is shared, the subject is consenting to it being harvested for research Undervalues subject's intent Ignores how research method might allow un-anticipated access to “restricted” data Going forward Must recognize that a user making something public online comes with a set of assumptions/expectations about who can access and how Does anything outside this need specific consent?

26. Conceptual Gap: Harm Researchers often imply “data is already public, so what harm could happen” Ignores dignity & autonomy, let alone unanticipated consequences Going forward Must move beyond the concept of harm as requiring a tangible consequence Protecting from harm is more than protecting from hackers, spammers, identity thieves, etc Consider dignity/autonomy theories of harm Must a “wrong” occur for there to be damage to the subject? Do subjects deserve control over the use of their data streams?

27. Conceptual Gaps ==> Policy Vacuums Researchers & IRBs are trying to do the right thing when faced with Internet research projects (and usually, they do) But the fluidity and complexity of Web 2.0 creates significant conceptual gaps Leaving IRBs with policy vacuums Are IRBs able to sufficiently fill these gaps and scrutinize innovative internet research with respect to these new complexities?

28. How to address the policy vacuums? Specialized training SACHRP should require IRBs (or designated members) to participate in certified workshops on Internet research ethics Best practices & guidelines SACHRP should provide general best practices & guidelines (or link to existing ones) to help IRBs when confronted with Internet research Other collaborations InternetResearchEthics.org Digital Media & Learning collaboration

29. Research Ethics in the 2.0 Era:Conceptual Gaps for Ethicists, Researchers, IRBs Michael Zimmer, PhD School of Information Studies University of Wisconsin-Milwaukee zimmerm@uwm.edu http://michaelzimmer.org Secretary’s Advisory Committee on Human Research Protections July 21, 2010