Stephen Lilley (USA)
With Science and Technology Studies (STS) there is the penchant to describe scientific laws and the most established technologies, practices, and organizations as having been born out of instability and, if conditions and forces change, potentially returning to that state. Considering the burgeoning area of Internet research, it is fascinating just how fluid and dynamic a field can be. Deborah Johnson, James Moor and other pioneers believed that the unique nature of the Internet (for example, many-to-many communication, anonymity, and reproducibility) required the development of new theoretical approaches, similarly online researchers of today believe that they must develop the groundwork as they go.
When it comes to the very crucial issue of how to protect human subjects online, however, the lack of established and standardized protocols may be viewed as a weakness. This is compounded if the state of instability is contrasted with an established oversight system, which in America is most pronounced by the Common Rule and Institutional Review Boards (IRBs). However, I contend that this is a poor and fruitless comparison because 1) the American regulatory structure is, itself, unstable and 2) the unsettled nature of Internet research ethics is more positively characterized as flexible and open to the contingencies of fieldwork. In this presentation, I “turn the tables” on the assumed dominant-subordinate relationship– rather than describe how online research can be organized to appease or fit-in with the broader regulatory scheme, I suggest how the field can inform a long overdue reorganization of the American oversight system.
I take my cue from the National Bioethics Advisory Commission’s highly critical report on the U.S. regulatory review system. The Commission was charged by executive order in 1995 to provide recommendations to federal agencies regarding the oversight of research. Its final report entitled, “Ethical and Policy Issues in Research Involving Human Subjects,” released in August, 2001, characterizes the system of protections as a “patchwork arrangement” “no longer sufficient,” “too narrow in scope,” and “unnecessarily bureaucratic.” (Prologue, i) The Commission identified online research as one of many new forms of research (others included industry-sponsored, multi-site, and community research) for which the system is ill-suited.
Of relevance to this discussion is the Commission’s critique of IRBs (the local organizations responsible for independent reviews of academic research). It was acknowledged that IRBs are too rigid and cumbersome, more specifically, they 1) are overburdened by case loads, dominated by a medical-clinical approach to review, and often have poorly trained members; and 2) have limited flexibility in matching the risk level of proposed studies with an appropriate level of independent review. The Common Rule (the mandated policies and procedures for protection of human subjects), and in particular the rules regarding waivers for informed consent, were criticized as well.
The Commission seemed torn in its recommendations between more top-down control in terms of accreditation, required training of IRB members, specifying the constitution of the boards, etc, and its admission that greater flexibility would allow more sensitive reviews. Although online researchers do not speak with one voice, there is concern over research abuses and support for independent review, albeit of a flexible and subtle kind. Internet research presents difficulties in terms of establishing subject identities (because of pseudonyms and the use of multiple identities), it takes place in venues (e.g., chat rooms, email) that are diverse from each other and markedly different from clinical settings, and the possibility and strategies for informed consent are, accordingly, more complex and contextually specific. The one-model-fits-all approach of IRB reviews can not work under these unusual conditions.
A commitment to the Common Rule, and the expected universal adherence to it, can be, as well, an obstacle. For example, the Commission recognized that the restrictions under which informed consent may be waived (primarily written with clinical studies in mind) is too rigid and prohibitive of certain types of social scientific research. In its recommended re-writing of the rule, however, it retained provisions that may be prohibitive to online research, for example, that an adequate plan be in place for contacting participants.
As STS scholars are quick to point out, a set of policies and rules can never adequately cover the entire set of possible contingencies. Although this insight can be used to question the very practicality of a “common rule,” it need not be used to condemn IRBs and independent review. For instance, we recognize that online researchers have not reached a consensus regarding specific application of research norms, and that ethical decisions are often made on a case-by-case basis. Nevertheless, it can be argued that under these open conditions it is even more imperative that some organization, or set of reviewers, is in place to consider the nuances of a study and at the same time serve as an advocate for subjects. Rather than rely on present IRBs, which are predominately run by academic institutions, however, the regulatory system should facilitate the development of specialized IRBs, for example boards under the auspices of professional research associations. This could address the concerns that current boards are over-stretched, both in workload and expertise.
Online researchers sometimes negotiate with subjects the extent of identity disclosure and observation, and this “grounded” negotiation may actually promote subjects’ autonomy and self-determination. Having review boards and policies that are similarly flexible makes sense. In conclusion, more than simply being the “straw that broke the camel’s back,” online research, by its very creativity and openness suggests the merit of having a more flexible, grounded review structure.