Internet Research Ethics: An Overview and Discussion With the DOE Human Subjects Working Group

1. Internet Research Ethics: An Overview and Discussion With the DOE Human Subjects Working Group Elizabeth Buchanan, Ph.D. Endowed Chair in Ethics Center for Applied Ethics University of Wisconsin-Stout

2. Acknowledgements • Libby Smith • John Ordaz • Dean Gallant • Ivor Pritchard, Laura Odwazny, Julia Gorey, OHRP • SACHRP—Outgoing Chair Barbara Bierer and all members (Disclaimer: I am not a member!) • National Science Foundation grant numbers 0646591 and 0924604

3. Objectives 1. To provide an overview of the types and methodologies of Internet research 2. To review regulatory and ethical complexities of various forms of Internet research 3. To review the DOE documents on Internet research 4. To discuss specific case studies of potential importance to DOE research

5. DOE’s Burning Questions…? • Is the web a “free-for-all” How/where do we draw the line with public information? • How do we deal with matching and merging of “de-identified” datasets? • How do we deal with deceptive research without informed consent? PIs may assume that internet research is not HSR and therefore doesn’t need informed consent.  Where do we draw the line on what is acceptable? • Is there a line that distinguishes “publicly available” information on the web from not publicly available?  • Say that I’m a member of a professional society and want to track trends in my field using posts to their members-only blog.  Would that data be considered publicly available?  How about unsecured Facebook posts or LinkedIn discussion group posts? 

6. Types of Internet Research

9. Implications of Big Data on Research Ethics • A “Fourth” paradigm? (Bell, et all, 2009) • “Research is driven by the availability of data at an unprecedented scale, and by the computational resources with which to extract the maximum value” (Birkin, 2012) • “Databases of the future will increasingly be reliant on personal data of one form or another, and at present the rules and conventions for dealing with data of this type are loosely defined at best” (Birkin, 2012) • “the utility and privacy of data are linked, and so long as data [are] useful, even in the slightest, then [they] are also potentially reidentifiable” (Ohm, 2010)

10. Keep this in Mind…We’ll Come Back to This • DOE defines de-identified data as “a data set that has no, or limited, identifiers and for which a person with current knowledge of generally accepted scientific principles determines that the risk that the information could be used, alone or in combination with other reasonably available information, by an anticipated recipient, to identify an individual who is a subject of the information, has been reduced to the extent practicable.” A graded approach must be used in balancing de-identification of the datasets and the usability of the dataset to accomplish the needed research.

11. Fastest Growing Area

12. Mobile Research • FDA: Over 17,000 health and fitness apps, 15,000 medical apps • Participatory Sensing research: “always-on, always-present devices carried by billions can capture and transmit users’ location, images, motion, and user input. Mobile technologies are becoming a platform to document community needs and advocate for civic change, to understand personal habits and routines, and to document health problems and manage chronic illness. These new forms of data collection software utilize techniques traditionally employed by tools of surveillance: granular data gathering, sophisticated modeling, and inferences about personal behavior and attributes” (Shilton and Estrin, 2012). • More synchronous research (and other activities, eg real-time charitable giving, text #### to Sandy Relief, etc) • More mobile malware

13. Internet research examples: • Collection or analysis of information already available on Internet without direct interaction with human subjects • Scraping data from social media profiles • Review/analysis of published data sets • Computer security research

14. Internet research examples: • Use of Internet as a vehicle or tool for recruitment or interaction with subjects • Twitter recruitment ads • YouTube adshttp://www.youtube.com/watch?v=he0EBLm3Irk • Social media pages

19. Internet research examples: • Research about the Internet itself • CAIDA (Cooperative Association for Internet Data Analysis): • For example: • Network Traffic analyses • Mapping IP Addresses to Routers • Transaction log analyses • Geolocational trending (about the Internet AND about user behaviors: eg, maps showing where most hate speech-tweets originated during election night; or, epidemiological mapping)

23. Internet research examples: • Research about Internet users • Fandom studies: “I am studying Star trek fandom as part of my undergrad thesis. I want to post to the kirkspock community to introduce myself and ask the community about possible concerns. Once I address concerns, I will create the questionair (sic) and post that, asking the community about their experiences with the community of Star trek fandom. I wanted to check and make sure it was acceptable before I did any of this. Below is what I would post as an introduction, that has a little more information….”

24. Internet research examples: • Internet-based clinical trials • Industry sponsored • Investigator initiated • For example: REMOTE Virtual Trial • http://www.inpharm.com/news/159024/digital-pharma-pfizer-virtual-clinical-trial • http://www.youtube.com/watch?v=0fEx5V45zp4

25. Internet research examples: • Online experiments: • See http://psych.hanover.edu/research/exponnet.html--for example: • This study is aimed at connections between the attitudes of people toward the social networking platform Facebook, their views and beliefs regarding common conspiracy theories and their scores on measures of schizotypy. Based on previous research by Lankton and McKnight (2011) attitudes and beliefs with regard to the interaction with a social networking platform will be assessed in terms of how much participants trust this form of technology. This will then be integrated into the schizotypy assessment, linking the attitudes toward conspiracy theories and perceptions of surveillance with scores on common personality measures.

26. Crowd-Sourced Research

27. Authenticity, Reliability, Validity

28. BREAK!

29. The Nitty Gritty: Considerations and Recommendations Concerning Internet Research and Human Subjects Research Regulations

30. Draft Document • 2010: Panel Presentation to SACHRP • 2011: Many IRB Forums, PRIM&R sessions on Internet Research • 2012: Discussion with SACHRP Chair, OHRP Representative • Began a series of conference calls with SOH, SAS, ex-officio committee members • April 11 • April 23 • April 27 • May 4 • June 1 • July 9 • October 10; should be voted on in next meeting**

31. Let’s Begin the Begin… • “Investigators and IRBs should remember that the Belmont Report’s fundamental principles of respect for persons, beneficence, and justice are as applicable to Internet research as they are to any other form of human subjects research. Regardless of how the regulations may be interpreted in individual studies, adherence to these fundamental principles is important to encouraging public trust in the ethical conduct of Internet research.”

32. Quick Poll: • Which questions garnered little to no debate???

33. Recall our Big Data Graphic! Lots of flow and movement between and among spheres….

35. HTM • Used primarily in military ops and other settings, eg, LA gangs (George Tita’s research) • Remember that…: “Research and data gathering activities primarily conducted for military or intelligence purposes to understand the ―human terrain,—the social, ethnographic, cultural, and political elements of the people among whom the U.S. Armed Forces are operating and/or in countries prone to political instability. This work includes observations, questionnaires, and interviews of groups of individuals, as well as modeling and analysis of collected data, and may become the basis for U.S. military actions in such locations. In addition to Human Terrain Mapping (HTM), such activities are often referred to as human social culture behavior (HSCB) and human terrain systems (HTS) studies. It is DOE policy that HTM activities will be managed as HSR.”

37. From HSWG’s Flow Chart: • Acceptable Approach: All of the de-identified data needed for the project is from the public domain, including open-source data. • Note: There is no contact with the subjects, either in person, by phone, by social media, etc.

38. What is De-Identified, Anyway? • “Researchers and statisticians use deletion, coding, encryption and aggregation techniques to create “de-identified” or “anonymized” datasets to protect subject privacy to various degrees” (Mattern, 2011). • Limited data sets, statistical de-identification, de-identified data sets (identifiers removed and substituted), anonymized (HIPAA standards—are these appropriate???)

39. And… • “…it is important to remember that open-source data, once aggregated and manipulated, can become identifiable, and even classified (as in the case of WikiLeaks). This issue applies to both HTM and non-HTM projects” (DOE).

40. From DRAFT SACHRP Document:

41. Discussion/QA

42. Selected IRB’s with Internet Research Guidelines • http://www.uwstout.edu/ethicscenter/upload/IRB-Human-Research-11092012.pdf

43. For more information • Elizabeth Buchanan, Ph.D.Center for Applied EthicsUniversity of Wisconsin-StoutPO Box 413Menomonie, Wisconsin, USA 715 232 5184buchanane@uwstout.edu