1、What IRB members should know about the ethical conduct of online research?,Dr. Charles Ess Distinguished Research Professor Interdisciplinary Studies Center Drury University Springfield, Missouri 65802 USA ,Professor II Programme for Applied Ethics Norwegian University for Science and Technology (NT

2、NU) Trondheim, Norway,Some Hats. Chair, ethics working committee, Association of Internet Researchers, 2000 present “Critical Friend,” RESPECT Project, funded by the European Commissions Information Society Technologies (IST) Programme, to draw up professional and ethical guidelines for the conduct

3、of socio-economic research.2002-2004. See Co-chair, biennial conferences on “Cultural Attitudes towards Technology and Communication” (CATaC) 1998 (London), 2000 (Perth), 2002 (Montral), 2004 (Karlstad, Sweden): Guest Professor, Department of Digital Aesthetics and Communication (DiAC), IT-Universit

4、y, Copenhagen, Denmark, Fall, 2003 Fulbright Senior Scholar - Faculties of Chinese Studies, Media Studies, Trier University, Trier, Germany, Fall, 2004. Comparative Philosophy “Western” virtue ethics and ethics of care vis-vis Confucian thought;Discourse Ethics Habermas, feminism, “Open Source”,Pop

5、Quiz: How Well Can You Answer the Following Questions? What should IRB members know about the ethical conduct of online research? A LOT 1. Understanding the lingo: cookies, encryption, etc. 2. Is the internet private or public space? 3. How can anonymity or confidentiality be insured? 4. Proper cons

6、ent using the web. 5. Ethical recruitment practices 6. “Observational” research 7. Securely storing electronic human subject data. 8. What should and IRB see in a protocol that is using the internet. E.g., non-example and/or example of a good protocol? And: how far have we achieved the stated goal o

7、f educating the IRBs so that this DOES NOT happen: “Researchers often say that IRB members ought to be educated about online research so that we are not artificially or unnecessarily restricted in what we do.”,Overview Internet Research Ethics - Preliminaries A. Initial questions, central issues B.

8、Methodologies and ethics C. Legal issues D. Technological Issues - Privacy Online? Cross-cultural issues: the challenges of Internet Research Ethics in international collaborations A. The United Kingdom, European Union and Scandinavia I. European Union - Data Privacy Protection Codes II. Scandinavia

9、 - NESH III. RESPECT Guidelines B. Ethical guidelines for Internet Research in Asian countries? I. Internet research ethics in Japan? II. Confucian shen-du (慎獨(dú)) (self-regulation) vis-vis Germany, Scandinavia? III. Data Privacy Protections in Asia A Primer,1. Internet Research Ethics - Preliminaries

10、A. Initial questions, central issues in the AoIR ethical guidelines: (see ) Venue/environment - expectations -authors/subjects - informed consent Where does the inter/action, communication, etc. under study take place? What ethical expectations are established by the venue? In particular: are the “s

11、paces” more public (less need for informed consent, etc.) and/or more private (greater need for informed consent, etc.)?,Venue/environment: Where does the inter/action, communication, etc. under study take place?Some possibilities Homepages Weblogs Google searches Email (personal e-mail exchanges) L

12、istservs (exchanges and archives) USENET newsgroups ICQ/IM (text-based) CUSeeMe (and other audio-video exchanges) Chatrooms, including IRC MUDs/MOOs gaming images and other forms of multi-media presentation (webcams, etc.) (some forms of) Computer-Supported Cooperative Work systems,1. Internet Resea

13、rch Ethics - Preliminaries What ethical expectations are established by the venue? Some chatrooms, blogs, webpages, etc. may have explicit statements announcing, for example, that “This _ is an open and public communication environment. Be aware that your communications are accessible to anyone ente

14、ring this space, and may be used without your knowledge and/or permission. This _ takes no responsibility for protecting the privacy of any communication exchanges made here.” Such clear statements are usually interpreted to establish no expectation of privacy among those who use it - and thus commu

15、nications in these venues are not usually considered by IRBs to require the usual protections of confidentiality, anonymity, informed consent, etc. BUT ,What ethical expectations are established by the venue? Oftentimes, both researchers and IRBs have to make careful judgments regarding the expectat

16、ions of users: Even if, for example, a chatroom may be presumed to be considered a public and open space - oftentimes, users act as if their communications were private (because they dont know better, etc.) In some cases, despite the apparently public nature of such venues, both researchers and IRBs

17、 take a more “conservative” approach:in order to respect the expectations / assumptions of users (however mistaken), they will undertake protections of privacy, confidentiality, and informed consent. Ethical “good Samaritanism” - e.g.: Smith 2004; Reid 1996; King 1996); especially those taking up a

18、feminist communitarian ethics (drawn from Denzin 1997) that emphasizes the central importance of sustaining the web of personal relationships that emerge in the research project (Hall et al. 2004, 247-252; Walstrom 2004),What ethical expectations are established by the venue? - Additional considerat

19、ions - Does the content of the conversations make a difference (e.g., “car talk” vs. sexual abuse survivors / (illegal) immigration /)? Does the size of the chatroom make a difference? (Hudson lack of debriefing possibilities; lack of protection from exposure (i.e., violation of privacy, confidentia

20、lity, anonymity leading to harm to reputation and self-esteem); lack of knowledge about the potential for exposure first of all, as “Newcomers are not always aware of the public nature of online venues” (43); and, finally, lack of protection for the most vulnerable, i.e., children and adolescents, t

21、he elderly or institutionalized, those with learning disabilities and, perhaps most risky of all, people with “serious psychiatric conditions” such as depression or panic attacks (Mann 2003, 43f.).,1. Internet Research Ethics - Preliminaries Minimizing risk of harm lack of protection for the most vu

22、lnerable, i.e., children and adolescents Cf.: focus on issues regarding online research involving minors: Bober 2004, Lfberg 2004, Reips 1999; Ridderstrm 2003, Stern 2003, 2004. and Policy for IR, University of Wisconsin-Milwaukee: 11. Online research with minors is strongly discouraged. If minors a

23、re recruited for online research, a written, signed informed consent by a parent or guardian is required. See also: sample consent forms for parents and children in AoIR ethics document, section VII (Addendum 3) - courtesy of Leslie Regan Shade.,1. Internet Research Ethics - Preliminaries Informed c

24、onsent: specific considerations Timing: when in the course of the project is consent to be requested? Medium? Online (e.g., via email or website? “Best practice” paper) Addressees? E.g., in groups with high turnover, is permission from forum owner / moderator sufficient? How material is to be used?

25、For internal data analysis only for citation in scientific publication, possibly mass media? Example: pseudonyms + direct citations of text allowable if risk to participants, should their identity be found out (thank you, Google!), is minimal,1. Internet Research Ethics - Preliminaries Informed cons

26、ent: specific considerations Possible range of consent options: (1) consent to having their nickname and communicative text used for data analysis only (no publication of name or text); (2) consent to having either their nickname or text published in an academic work, but never together (i.e., no id

27、entifiers); (3) consent to having either their nickname or text published in an academic work, but never together (i.e., no identifiers) and providing they get to see the “write up” prior to publication; (4) consent to having both their nickname and text published in academic work, thereby being cre

28、dited as the authors of their own words or (5) consent to having both their nickname and text published in academic work, thereby being credited as the authors of their own words, providing they get to see the “write up” prior to publication. The last two options deal directly with the issue of CMC

29、copyright. (Lawson 2004, 93),1. Internet Research Ethics - Preliminaries II. Initial ethical and legal considerations How far do extant legal requirements and ethical guidelines in the researchers discipline(s) “cover” the research? How far do extant legal requirements and ethical guidelines in the

30、countries implicated in the research apply? What are the initial ethical expectations/assumptions of the authors/subjects being studied? What ethically significant risks does the research entail for the subject(s)? What benefits might be gained from the research? What are the ethical traditions of r

31、esearchers and subjects culture and country?,1. Internet Research Ethics - Preliminaries II. Initial ethical and legal considerations Discipline-specific: psychologists are in luck! Kraut, Robert, Judith Olson, Mahzarin Banaji, Amy Bruckman, Jeffrey Cohen, and Mick Couper. 2004. Psychological Resear

32、ch Online: Report of Board of Scientific Affairs Advisory Group on the Conduct of Research on the Internet. American Psychologist 59 (2: February/March): 105-117.,From: Kraut et al 2004, 110,Speaking of charts (IF not already familiar with them Human Subject Regulations Decisions Charts (Sept. 24, 2

33、004) ,Speaking of charts (IF not already familiar with them) Human Subject Regulations Decisions Charts (Sept. 24, 2004) Office for Human Research Protections: whether an activity is research that must be reviewed by an IRB whether the review may be performed by expedited procedures, and whether inf

34、ormed consent or its documentation may be waived.,II. Initial ethical and legal considerations Discipline-specific: psychologists are in luck! On the other hand Peden and Flashinski (2004) survey of online experiments and surveys: Good compliance with requirements for avoiding deception and excessiv

35、e inducements / Least compliance with requirements for informed consent / debriefing (2004, 14) While 45% of studies asked for personal information (name, phone number) - only 20% used secure sites and only 19% created separate data files for personal information (2004, 15) “Although psychologists a

36、re expected to protect confidential information, our results indicate considerable room for improvement” (ibid).,1. Internet Research Ethics - Preliminaries II. Initial ethical and legal considerations But most (all?) other disciplines may have no specific guidelines for Internet Research Ethics. An

37、d: beware of potential conflicts in interdisciplinary collaborations, e.g. Colleagues from discipline X believe that raw data should be accessible only to the researchers who collected it, while Colleagues from discipline Y assume that raw data will be shared with them in the course of the project.

38、Contrast in expectations discovered only once the research project was underway stalemate!,1. Internet Research Ethics - Preliminaries B. Methodologies and ethics More objectivist methodologies emphasize classical scientific norms such as replicatability. Such methodologies thus require publication

39、of participant characteristics such as gender, age, etc. but such publication can run the risk of violating participant confidentiality and anonymity, especially if additional information is published, such as verbatim quotes that may be subsequently traced (as available in a publicly accessible arc

40、hive, etc.).,1. Internet Research Ethics - Preliminaries B. Methodologies and ethics As researchers adopt methodologies that emphasize, for example, Geertzs “thick description” and/or, participant-observation approaches, the resulting need for publishing more details regarding research participants

41、and their interactions thereby increases the threat to their anonymity and confidentiality (Lawson 2004, 91). Methodologies of participant observation and discourse analysis in online environments thus heighten the importance of privacy, informed consent, and ethical issues surrounding the use of pa

42、rticipants texts (Olivero and Lunt 2004, 102).,1. Internet Research Ethics - Preliminaries B. Methodologies and ethics Social network research: ProjectH: quantitative analysis of aggregated, publicly available text, voluntarily posted to large discussion groups no informed consent necessary (Rafaeli

43、, Sudweeks, Konstan, and Mabry, 1998, cited in Haythornthwaite and Shoemaker 2005) BUT: 1. Insiders may recognize pseudonyms, disguised groups; 2. potential threat to social dynamics, expectations of confidentiality of in-group information 3. Sociograms may reveal unexpected, undesirable characteris

44、tics of networks,1. Internet Research Ethics - Preliminaries B. Methodologies and ethics Social network research: Haythornthwaite and Shoemaker 2005 Used by permission Contact: Caroline Haythornthwaite Susan Shoemaker ,1. Internet Research Ethics - Preliminaries B. Methodologies and ethics Social ne

45、twork research: Ethical recommendations: 1. Consent required from both individuals and group leader with any dissent = no permission whatsoever. 2. Range of consent options: A. for distribution of aggregated results of analyses in publications in which individuals will not be identifiable OR B. for

46、distribution of results of analyses in publications in which individuals will not be identified by name, but who may be identifiable to others who know the team. - Haythornthwaite and Shoemaker 2005,Internet Research Ethics - Preliminaries C. Legal issues especially re. data privacy protection As is

47、 famously known: E.U. Data Privacy Protection Laws forbid transferring private information to countries with less stringent privacy protections such as the United States. Some initial comparisons ,Internet Research Ethics - Preliminaries Gartner Group, “Security Becomes Key Concern in Global Sourcin

48、g” ,Internet Research Ethics Preliminaries C. Legal issues especially re. data privacy protection In contrast with the E.U. and other countries following its benchmark of protection regarding cross-border data transfers: China / Japan / U.S. / Canada on Federal level allow unimpeded cross-border dat

49、a transfer. Canadian Provincial jurisdictions: Ontario more restrictive legislation considered? Quebec “opt out” policy: data subject must affirmatively withdraw consent to prevent data from being transferred outside the jurisdiction. (Raskopf 2003, 12),Internet Research Ethics Preliminaries D. Tech

50、nological Issues - Privacy online? On the one hand increasing technological challenges to privacy online - whatever peoples expectations might be, e.g. Full-string text searches Content analysis software Traffic capture software (Tcp-Dump, Ethereal, Etherape) Web/User Data Capture From: Jeremy Hunsi

51、nger, /ethicsv1.mov, for further discussion, documentation,Internet Research Ethics Preliminaries D. Technological Issues - Privacy online? On the other hand legal requirements (E.U., etc.) make a difference reasonable efforts at protecting privacy, confidentiality, etc. e.g. Tr

52、eat electronic human subject data like paper research data: restrict access, lock securely; plan to destroy - AND encrypt + password protect. Do not transmit sensitive information across the Internet unless encrypted. One (extreme?) possibility: store raw data on one server, personal data on another

53、 - keep the correlation key in your head ?,Internet Research Ethics Preliminaries D. Technological Issues - Privacy online? And: attempt to determine what reasonable standards of privacy, anonymity, and confidentiality might be. It strikes me that the issue on all of these is one of equity more than

54、 absolute security. In an age when even the CIA cant keep all the names of its agents out of the newspapers, IRBs can only demand good faith efforts that are reasonable in view of the risks involved, and that are equivalent to the level demanded of researchers in other venues.- Mark D. Johns,2. Cros

55、s-cultural issues: the challenges of Internet Research Ethics in international collaborations The United Kingdom, European Union and Scandinavia I. European Union - Data Privacy Protection Codes II. Scandinavia - NESH III. RESPECT Guidelines B. Ethical guidelines for Internet Research in Asian count

56、ries? I. Internet research ethics in Japan? II. Confucian shen-du (慎獨(dú)) (self-regulation) vis-vis Germany, Scandinavia? III. Data Privacy Protections in Asia A Primer,2.A.I: European Union - Data Privacy Protection Codes E.U. / U.S. approaches to “First Principles” of Data Protection (AoIR - Paul Rei

57、denberg) EU Data Privacy Protection Guidelines Directive 95/46/EC of the European Parliament and of the Council of 24 October 1995 on the Protection of Individuals with Regard to the Processing of Personal Data and on the Free Movement of Such Data. Data Subjects must Unambiguously give consent for

58、personal information to be gathered online; Be given notice as to why data is being collected about them; Be able to correct erroneous data; Be able to opt-out of data collection; and Be protected from having their data transferred to countries with less stringent privacy protections.,Rooted in: a)

59、“First Principles” of data protection, exemplified in U.K. Younger Committee, 1972 : organizations Are accountable for personal information they obtain; Should identify the purposes for which the information is processed at or before the time of collection; Should only collect personal information with the knowledge and consent of the individual (with exceptions); Should limit the collection of personal information for purposes other than those identified, except with the consent of the individual; Should retain information only as long as necessary;,6.