Working With Human Subjects

An Internet-Based Study Justification for Waiving Informed Consent

Faith, Identity and the Rhetoric of the Emerging Church Online

Jennifer Stewart

Justification for Waiving Informed Consent

(1) The research involves no more than minimal risk to the subjects

Because our study seeks to gather information on “identity, language, communication, cultural beliefs or practices, and social behavior,” we believe that our methods pose no more than minimal risk to the subjects. Our examination of existing texts and the rhetorical strategies employed by members of an online community is guided by ethical principles developed by the Association of Internet Researchers (AOIR). AOIR suggests several guidelines by which to assess whether informed consent and confidentiality are issues of concern. When considering whether to utilize the texts of participants in online community sites, AOIR suggests asking, “Are participants in this environment best understood as “subjects” (in the senses common in human subjects research in medicine and the social sciences) – or as authors whose texts/artifacts are intended as public?” AOIR makes the distinction between subjects, who are interacting in “reasonably secure domains for private exchanges,” and those who “may be understood as authors intending for their work to be public.” The domain of the message board is a publicly accessible format, distinct from personal email or private chat rooms; therefore, as AOIR proposes, “fewer obligations to protect autonomy, privacy, confidentiality… follow” (AOIR, “Ethical decision-making and Internet research,” p. 7). Using these guidelines, message boards at www.theooze.com represent a public domain and users of the site may be understood to be authors. We see this study as analogous to reading a co-authored book.

(2) The waiver or alteration will not adversely affect the rights and welfare of the subjects

AOIR also addresses the issue of the rights of participants in online communications. They suggest that the rights of participants in online activities vary according to those participants’ expectations of privacy and the nature of the format in which communication is taking place. Within its “Terms of Service” disclaimer regarding “Communication Facilities” (a designation that includes the electronic bulletin/message boards, and chat rooms), www.theooze.com explains that users, “expressly acknowledge and agree that the Communication Facilities provide a means of public and not private communications.” Registration is required in order to access and post to the message boards, but minimal personal and demographic data is collected in the registration process. The site’s privacy policy explains that “each user will be given the opportunity to create a User Profile; all of this information is optional, and it is only for other users to be able to connect with you based on the information you choose to provide.” Users, then, have the option to hide data such as age, location and email address from other community members; in short, users are not required to reveal any information to other users, beyond a selected screen name.

Comparing the policies of the site with the ethical guidelines suggested by AOIR, use of message board postings to www.theooze.com will not constitute a breach of privacy because the users of the site are aware of the privacy limitations in the internet context. Given that message boards constitute a public domain in which texts are intended for public view (and which differ from email or private chat rooms in that they are intentionally made available for public reading), we contend that use of texts from these sites will not adversely affect the rights of the participants involved.

(3) The research could not be practicably carried out without the waiver or alteration

The waiver of informed consent is necessary to the project because it would pose a significant difficulty to attempt to inform every author that his or her written text may be collected for use in our study. The sites of investigation are within the public domain and are easily accessible; any attempt to inform all users of the project being undertaken could never be certain to reach every potential participant. Once a user has registered with the site, he or she is not required to read any or every post present. Reaching all users by email would also be impractical as there are over 14,000 registered users at www.theooze.com, and, as explained in the site’s privacy policy, each user may restrict outside access to his or her email address. Furthermore, because we are treating these individuals as authors (indeed, the site refers to users of its communication facilities as “authors” in its “Terms of Service” disclaimer), we do not intend to inform them of the use of their texts, anymore than we would inform the author of a book that he or she will be quoted in a research paper.

As explained above, message boards constitute texts within the public domain, and, in such a context, as AOIR proposes, “fewer obligations to protect autonomy, privacy, confidentiality… follow.” Informed consent, then, is not necessary for use of this textual content. Finally, there is a precedent for waiving informed consent in the use of these kinds of online texts. Spencer Burke, the creator of www.theooze.com, has himself utilized online texts from the website as part of a book he has written, entitled Making Sense of Church: Eavesdropping on Emerging Conversations about God, Community and Culture. In his book, Burke quotes and uses passages of text from writers who post at www.theooze.com; Burke treats those writers as one would treat a published author.

(4) When appropriate, the subjects will be provided with additional pertinent information after participation

In this situation, we do not feel it will be necessary or appropriate to inform subjects or provide additional information after participation in the study.

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Introduction