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Slide 1 - Social Media, Research, and Ethics: Challenges and Strategies Elizabeth A. Buchanan, Ph.D. Endowed Chair in Ethics University of Wisconsin-Stout Presentation for The Department of Energy and the University of Southern California Community IRB Members
Slide 2 - Objectives To define types of Internet and social media To review examples of research intersecting with the Internet and social media To describe the types of ethical and regulatory issues that these interactions raise To discuss how IRBs are reviewing novel forms of research recruitment, data collection, dissemination, and storage of data To provide strategies for successful research and review of research in social media/Internet-based research
Slide 3 - Internet Research
Slide 4 - Internet Research Internet-based research, broadly defined, is research which utilizes the Internet to collect information through an online tool, such as an online survey; studies about how people use the Internet, e.g., through collecting data and/or examining activities in or on any online environments; and/or, uses of online datasets, databases, databanks, repositories. Internet as a TOOL FOR research or… Internet as a MEDIUM/LOCALE OF research TOOL=search engines, databases, catalogs, etc… MEDIUM/LOCALE=chat rooms, MUDs, MOOs, newsgroups, web sites, MMORPGs, blogs, skype,social media, tweets, online course software, etc Increasingly, the line between tool and locale is blurring in the face of social media
Slide 5 - Key Ethical and Regulatory Issues Recruitment Consent Age verification Documentation Privacy/Anonymity/Confidentiality Data Sharing Data Storage TOS/EULA—bind the user/subject to other terms?
Slide 6 - What is Ethically Unique to E-Data? Greased Malleable Trackbackable/Mineable “Mashable” Travels across platforms (collapse of “internet” and cell/mobile/grid)
Slide 7 - Forms of Research Venues Email, listserves, archives, chat rooms, SMS, IM, social network sites, blogs, home pages, media sharing sites, virtual worlds, online marketplaces, online gaming, databanks, repositories “Non-place” based sites such as mobile data collection and dissemination
Slide 8 - Forms of Research: Exploring Where Human Subjects Fit Consider Methodologies, Venues, Types of Data Generated through: Quantitative Research Data Aggregation, Scraping, Transaction Log Analysis, Network Analysis, Statistical Analysis, Surveys, etc Qualitative Research Ethnography, Focus Groups, Observation, Surveys, Content/Discourse Analysis, etc Emerging use of synchronous data collection/sharing across methodologies Emerging use of mixed venues leads to “greased and malleable” data flow 8
Slide 9 - For Example California Clinical Trials
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Slide 14 - Subject recruitment OHRP considers subject recruitment part of informed consent Recruitment plan must receive IRB review/approval prior to initiation Online recruitment methods YouTube Twitter streams Blog postings “Push” methods
Slide 15 - Subject recruitment (2) OHRP guidance on IRB review of clinical trial websites http://www.hhs.gov/ohrp/policy/clinicaltrials.html No IRB review needed for descriptive information: study title purpose of the study protocol summary basic eligibility criteria study site location(s), and how to contact the study site for further information.
Slide 16 - Subject recruitment (3) IRB review needed if additional information is provided Description of research risks/potential benefits Solicitation of identifiable private information (e.g. eligibility survey) Incentives – monetary and non-monetary What needs to be reviewed: Recruitment plan, not the actual webpage
Slide 17 - Social media vs. Traditional Recruitment Uncontrolled following discussion among viewers/participants (and others, possibly) Interactive, not static Subsequent posts may modify already posted information Must PI/IRB actively monitor social media sites used for recruitment? -FDA watch for reporting
Slide 18 - Privacy….
Slide 19 - “Recorded in a manner whereby subjects may be identified…” Is an email address an identifier? Do tweets contain identifiers? Does the inclusion of IP address make information identifiable? Possibility of reidentification –how meaningful is this decision point?
Slide 20 - Public and Private Spaces Is a particular forum, listserve, chat room, bulletin board, etc considered by its members to be a public space or a private space? What expectations of privacy exist? What role does the researcher play in the space? (Observer, participant, member, other?) What is the content of the data? (Sensitive/non-sensitive?) Sveningsson’s continuum: Non-Sensitive Information ? ? Private Public No ? Sensitive Information
Slide 21 - IRB Review Risks--Two main sources of harm: Participation in the research No direct contact with subjects; can’t deal with individual reactions (intervention or debriefing) Breach of confidentiality Reliability and validity of the data skewed subject populations ease with which subjects can mislead investigators difficulty in preventing multiple submissions Invalid research can have no benefit inappropriate when there is risk to subjects
Slide 22 - Minimal Risk Probability and magnitude of harm or discomfort in the research not greater than ordinarily encountered in daily life or during performance of routine physical or psychological examinations/tests (.102(i)) Gateway to expedited review (.110); waiver of consent (.116(d)) and documentation (.117(c)(2)); no need to explain compensation or any treatments for research-related injury in consent (.116(a)(6)); Subparts B, C, D categories of permissible research Have the risks associated with breaches of data security or the likelihood of access by 3rd parties altered the conception of minimal risk in internet research? Less privacy, more observation in general in daily life activities
Slide 23 - Consent
Slide 24 - Informed consent Consider waiver of consent and/or documentation, if appropriate Where consent required but documentation is waived, a “portal” can be used to provide consent information. e.g., subjects must click on consent page to get to next page. Virtual worlds—consent rooms and tokens Where documentation required – consider alternatives to traditional documentation --e.g., electronic signature
Slide 25 - Consent Portal
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Slide 27 - Research with Minors/Vulnerable Populations Points to consider in “screening out” children: use internet monitoring software or adult check systems none of these is foolproof. Since it may be difficult to guarantee that children won’t access research, some research may not be appropriate in the online context Importance of using “chunked” consent documents
Slide 28 - We started with a welcome page which briefly summarized the points of key interest
Slide 29 - We brought our eligibility criteria forward so we did not waste non-eligible persons’ time.
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Slide 31 - Encryption Guide? Thanks for your interest in participating in an online interview with me as part of the Drugs on Forums project. I use instant messaging as a means of conducting the online interview. This webpage explains how this process can be conducted with the same kind of confidentiality that applies to face-to-face or telephone interviews. As you may already be aware, emails and instant messages are insecure when sent in plain text. Firstly, they can be intercepted (read by others or altered by others), and secondly, the reader cannot be certain that the sender is who they claim to be. The most effective way of ensuring that what we write will only be read by each other is to use encryption. All the program options I recommend below are free and you will be able to use them with anyone once you show them how. Some are packaged as portable software, which means you can run them from a USB flash drive on any computer. If you are unable or unwilling to use these programs, using an instant messaging account that is not linked to your full name (eg. someguy@hotmail.com) will also provide a degree of confidentiality. If we communicate without encryption, it is possible that third parties could intercept and read our conversation without our consent. However as long as your identity cannot be easily worked out, any risk to you will be reduced. Many people who are concerned about online privacy may already have an email account that has never been associated with their full name. It is easy to start a free webmail account completely for this purpose.
Slide 32 - Online Support Groups
Slide 33 - Data Aggregation/Scraping
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Slide 35 - Regulatory Considerations Human subjects Private How to interpret “reasonably expect that no observation or recording is taking place” or “reasonably expect will not be made public” Identifiability, again Zip code + sex + DOB enough for Latanya Sweeney to identify Structure of social network, search terms, purchase habits, movie ratings on Netflix may uniquely identify individual IP address
Slide 36 - Regulatory Considerations Exemption 4 When is information “recorded in an identifiable manner” When are data, documents, or records publicly available on the internet? Does “publicly available” include large datasets purchased/obtained from Google or Facebook? What if data are semi-restricted -- available only to ‘friends’, listserve members? What if data are available through Wikileaks or other source where provenance is questionable?
Slide 37 - Key Considerations for Review What type of venue Expectations of privacy Consent procedures Sensitivity of data Harm/Risk Age verification Authentication of participants Identification of participants Use of encryption Storage/transmission of data
Slide 38 - Example Guidelines http://irb.uconn.edu/internet_research.html http://www.marianuniversity.edu/interior.aspx?id=13714 http://inside.bard.edu/irb/guidelines/ http://www.luc.edu/irb/irbonlinesurveys2.shtml http://www.research.psu.edu/policies/research-protections/irb/irb-guideline-10 http://www.cuny.edu/research/ovcr/human-subjects-research/resources/internetresearch.html
Slide 39 - Resources Internet Terminology@ internetresearchethics.org Expert consultation@ interentresearchethics.org New Internet research section in JERHRE
 

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