Research Ethics in the 2.0 Era

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, PhDAssistant Professor, School of Information Studies

Co-Director, Center for Information Policy ResearchUniversity of Wisconsin-Milwaukee

[email protected]

Agenda

What are the Ethical Issues related to Internet Research? Selected cases

Conceptual gaps

Closing the gaps for researchers & IRBs

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

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

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?

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”

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/

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/

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

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/

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,

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

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.

“Anonymity” of the T3 Dataset

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….

“All the data is cleaned so you can’t connect anyone to an identity”


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


T3 Facebook Project

Chronicle of Higher EducationJuly 10, 2011

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 releaseWhat conceptual gaps about research

ethics emerge?

Ethical Concerns


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 researchersNissenbaum, H. 2011. “Privacy in Context: Technology, Policy, and the Integrity of Social Life”

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

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

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?

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 intermediariesCarpenter, K & Dittrich, D. “Bridging the Distance: Removing the Technology Buffer and Seeking Consistent Ethical Analysis in Computer Security Research”

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”

Ethical Concerns


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…

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”

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?

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, PhDAssistant Professor, School of Information Studies

Co-Director, Center for Information Policy ResearchUniversity of Wisconsin-Milwaukee

[email protected]