Presentation at PRIM&R Advancing Ethical Research conference, Dec 2, 2011

1. 
Research Ethics in the 2.0 Era:
Conceptual Gaps for Ethicists, Researchers, IRBs
PRIM&R Plenary Panel
“Would Margaret Mead Have Blogged?
How Social Media has Changed Research”
December 2, 2011
Michael Zimmer, PhD
Assistant Professor, School of Information Studies
Co-Director, Center for Information Policy Research
University of Wisconsin-Milwaukee
zimmerm@uwm.edu
www.michaelzimmer.org

2. Agenda
 What are the Ethical Issues related to
Internet Research?
 Selected cases
 Conceptual gaps
 Closing the gaps for researchers & IRBs

3. Ethical Concerns
 The growing use of internet tools, platforms
& environments in research creates
conceptual gaps in our current understanding
of / approaches to key ethical issues:
 Privacy
 Anonymity vs. Identifiability
 Consent
 Harm & Human subjects
 Honesty & Research integrity

4. Illuminating Cases
1. Sensitive blogs & confidentiality
2. Research on Tor network
3. Harvesting & archiving of “public” Twitter
streams
4. Pete Warden’s harvesting (and proposed
release) of public Facebook profiles
5. Tastes, Ties, and Time (T3) Facebook data
release

5. Sensitive Blogs & Confidentiality
 Research on personal health blogs
 Content analysis of 40-50 blogs
 Online interview with 10 bloggers
 Subjects will choose their own
pseudonym, but researcher plans to use real
name of blogs and URL
 Must subjects consent to use of real blog
name, even if publicly visible?
 Could pseudonyms be linked back to blogs?

6. Research on Tor Network
 Computer science researchers increasingly
interested in network traffic on the Tor
anonymity network
 What kind of traffic is on this network?
 What kind of users?
 Or, just capture Tor data as convenience sample
 But users of Tor are intentionally seeking
additional privacy and anonymity
 Often not even vetted by IRBs
Soghoain, C. (2011) “Enforced Community Standards For Research on Users of the Tor Anonymity Network”

7. 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 (texts), or utterances?
 What are users’ expectations to how their
tweets are being found & used?
 What if a user later changes her privacy settings,
or deletes tweets, etc
http://michaelzimmer.org/2010/02/12/is-it-ethical-to-harvest-public-twitter-accounts-without-consent/

8. LOC Archiving of Public Tweets
 Library of Congress will archive all public tweets
 6 month delay, restricted access to researchers only
 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?
 Did users ever expect their tweets to become
permanent part of LOC’s archives?
http://michaelzimmer.org/2010/04/14/open-questions-about-library-of-congress-archiving-twitter-streams/

9. Pete Warden Facebook Dataset
 Exploited flaw in Facebook’s architecture to
access and harvest publicly-viewable profile
information of 215 million users
http://petewarden.typepad.com/searchbrowser/2010/02/how-to-split-up-the-us.html

10. Pete Warden Facebook Dataset
 Planned to release entire dataset – with all
personal information intact – to academic
community
 Would it be acceptable to use this dataset?
 Users knew (?) data was public, but did they
expect it to be harvested by
bots, aggregated, and made available as raw
data?
 Under threat of lawsuit from
Facebook, Warden destroyed the data
http://michaelzimmer.org/2010/02/12/why-pete-warden-should-not-release-profile-data-on-215-million-facebook-users/

11. T3 Facebook Project
 Harvard-based Tastes, Ties, and Time (T3)
research project sought to understand social
network dynamics of large groups of students
 Worked with Facebook & an “anonymous”
university to harvest the Facebook profiles of an
entire cohort of college freshmen
 Repeated each year for their 4-year tenure
 Co-mingled with other University data
(housing, major, etc)
 Coded for race, gender, political views, cultural
tastes, etc
Zimmer, M. 2010. “But the data is already public”: On the ethics of research in Facebook. Ethics & Information Technology.

12. 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
Zimmer, M. 2010. “But the data is already public”: On the ethics of research in Facebook. Ethics & Information Technology.

13. “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….
Zimmer, M. 2010. “But the data is already public”: On the ethics of research in Facebook. Ethics & Information Technology.

14. Good-Faith Efforts to Protect Subject
Privacy
1. Only those data that were accessible by default
by each RA were collected
2. Removing/encoding of “identifying” information
3. Tastes & interests (“cultural footprints”) will only
be released after “substantial delay”
4. To download, must agree to “Terms and
Conditions of Use” statement
5. 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.

15. T3 Facebook Project
Chronicle of Higher Education
July 10, 2011

16. Illuminating Cases
1. Sensitive blogs & confidentiality
2. Research on Tor network
3. Harvesting & archiving of “public” Twitter
streams
4. Pete Warden’s harvesting (and proposed
release) of public Facebook profiles
5. Tastes, Ties, and Time (T3) Facebook data
release
What conceptual gaps about research ethics emerge?

17. Ethical Concerns
 The growing use of internet tools, platforms
& environments in research creates
conceptual gaps in our current understanding
of / approaches to key ethical issues:
 Privacy
 Anonymity vs. Identifiability
 Consent
 Harm & Human subjects
 Honesty & Research integrity

18. Conceptual Gap: Privacy
 Presumption that because subjects make information
available on a blog, Facebook, or Twitter, they don’t
have an expectation of privacy
 Researchers/IRBs might assume everything is always
public, and was meant to be
 Assumes no harm could come to subjects if data is
already “public”
 New ethical problems…
 Ignores contextual nature of sharing
 Fails to recognize the strict dichotomy of public/private
doesn’t apply in the 2.0 world
 Need to track if ToS/architecture have changed, or if
users even understand what is available to researchers
Nissenbaum, H. 2011. “Privacy in Context: Technology, Policy, and the Integrity of Social Life”

19. Conceptual Gap: Anonymity vs.
Identifiability
 Presumption that stripping names & other
obvious identifiers provides sufficient anonymity
 Assumes only PII allows re-identification
 New ethical problems…
 Ignores how anything can potentially identifiable
information and become the “missing link” to re-
identify an entire dataset
 “Anonymous” datasets are not achievable and
provides false sense of protection
 But how can we share data safely?
Ohm, P. “Broken promises of privacy: Responding to the surprising failure of anonymization.” UCLA Law Review

20. Conceptual Gap: Consent
 Presumption that because something is shared
or available without a password, the subject is
consenting to it being harvested for research
 Assumes no harm can come from use of data already
shared with friends or other contextually-bound
circles
 New ethical problems…
 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?
 Must recognize how research methods might allow
un-anticipated access to “restricted” data

21. Conceptual Gap: Harm
 Presumption that “harm” means risk of physical or
tangible impact on subject
 Researchers often imply “data is already public, so what
harm could possibly happen”
 New ethical problems
 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?

22. Conceptual Gap: Human Subjects
 Researchers (esp. CompSci) often interact only
with datasets, objects, or avatars, thus feel a
conceptual distance from an actual human
 Often don’t consider what they do as “human
subject” research
 New ethical problems
 Must bridge this (artificial) distance between
researcher and the actual human subject
 Also consider other stakeholders within the complex
arrangement of information intermediaries
Carpenter, K & Dittrich, D. “Bridging the Distance: Removing the Technology Buffer and Seeking Consistent Ethical
Analysis in Computer Security Research”

23. Conceptual Gap: Honesty & Integrity
 Presumption that we must never falsify research
data
 Tends to privilege positivist, quantitative research
 Presumes any sensitive data can easily be scrubbed
without impacting results
 New ethical problems…
 Scrubbing data completely can destroy valuable
research results, yet concerns of privacy and
identifiability persist
 Need to consider the ethics of fabrication
 Composite profiles, constructed quotes, fuzzy
data
Markham, A. “Fabrication as Ethical Practice: Qualitative Inquiry in Ambiguous Internet Contexts”

24. Ethical Concerns
 The growing use of internet tools, platforms
& environments in research creates
conceptual gaps in our current understanding
of / approaches to key ethical issues:
 Privacy
 Anonymity vs. Identifiability
 Consent
 Harm & Human subjects
 Honesty & Research integrity

25. Conceptual Gaps  Policy Vacuums
 Researchers & IRBs are trying to do the right thing
when faced with research projects relying on Internet
tools and spaces
 But the fluidity and complexity of Internet tools and
environments creates significant conceptual gaps
 Leaving researchers & IRBs with considerable policy
vacuums
 How should researchers deal with using Internet tools in
their projects?
 How should IRBs review them?
 And how can we still ensure research still gets done…

26. Removing the gaps, filling the vacuums
 Scholarship
 Buchanan & Ess studying how IRBs deal with
Internet research
 Exploring new dimensions of Internet research
ethics by Markham; Soghoian; Carpenter & Dittrich;
and others (cited within)
 Resources
 “Internet Research Ethics Digital Library, Resource
Center and Commons”
http://www.InternetResearchEthics.org
 “Ethical decision-making and Internet research:
Recommendations from the AoIR Ethics Working
Committee”

27. Removing the gaps, filling the vacuums
 Education & outreach
 Growing focus at PRIM&R and related events
 Engage disciplinary conferences (ACM, ICA, etc)
 Policy guidance
 Advising SACHRP on “The Internet in Human
Subjects Research”
 Require Internet Research Ethics training for
all IRBs?

28. 
Research Ethics in the 2.0 Era:
Conceptual Gaps for Ethicists, Researchers, IRBs
PRIM&R Plenary Panel
“Would Margaret Mead Have Blogged?
How Social Media has Changed Research”
December 2, 2011
Michael Zimmer, PhD
Assistant Professor, School of Information Studies
Co-Director, Center for Information Policy Research
University of Wisconsin-Milwaukee
zimmerm@uwm.edu
www.michaelzimmer.org