The American Journal of Bioethics ISSN: 1526-5161 (Print) 1536-0075 (Online) Journal homepage: http://www.tandfonline.com/loi/uajb20 Nonexceptionalism, Research Risks, and Social Media: Response to Open Peer Commentaries on “Using Social Media as a Research Recruitment Tool: Ethical Issues and Recommendations” Luke Gelinas, Robin Pierce, Sabune Winkler, Glenn Cohen, Holly Fernandez Lynch & Barbara E. Bierer To cite this article: Luke Gelinas, Robin Pierce, Sabune Winkler, Glenn Cohen, Holly Fernandez Lynch & Barbara E. Bierer (2017) Nonexceptionalism, Research Risks, and Social Media: Response to Open Peer Commentaries on “Using Social Media as a Research Recruitment Tool: Ethical Issues and Recommendations”, The American Journal of Bioethics, 17:5, W1-W3, DOI: 10.1080/15265161.2017.1293755 To link to this article: http://dx.doi.org/10.1080/15265161.2017.1293755 Published online: 21 Apr 2017. Submit your article to this journal Article views: 11 View related articles View Crossmark data Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=uajb20 Download by: [The UC San Diego Library] Date: 02 May 2017, At: 13:30 The American Journal of Bioethics, 17(5): W1–W3, 2017 Copyright © Taylor & Francis Group, LLC ISSN: 1526-5161 print / 1536-0075 online DOI: 10.1080/15265161.2017.1293755 Correspondence Nonexceptionalism, Research Risks, and Social Media: Response to Open Peer Commentaries on “Using Social Media as a Research Recruitment Tool: Ethical Issues and Recommendations” Luke Gelinasy, Petrie-Flom Center at Harvard Law School and Harvard Catalyst Robin Piercez, Petrie-Flom Center at Harvard Law School and Harvard Catalyst Sabune Winkler, Harvard Catalyst Glenn Cohen, Petrie-Flom Center at Harvard Law School and Harvard Catalyst Holly Fernandez Lynch, Petrie-Flom Center at Harvard Law School, Harvard Catalyst, and Harvard Medical School Barbara E. Bierer, Brigham and Women’s Hospital, Harvard Medical School, and Harvard Catalyst We are grateful for the thoughtful commentaries on our target article “Using Social Media as a Research Recruitment Tool: Ethical Issues and Recommendations” (Gelinas et al. 2017), commentaries that in many cases further clarify and expand upon our recommendations. For the most part we find our interlocutors’ suggestions salutary and think that they enrich the discussion around the use of social media to recruit research participants. In this reply, we limit our discussion to three potential points of debate on which further analysis may help to clarify underlying issues: (i) the merits of using a “nonexceptionalist” lens in review of social media recruitment strategies, according to which social media recruitment should be evaluated using the same general ethical principles as offline recruitment; (ii) the distinction between general background risks of social media and the “research risks” of particular recruitment proposals for the purpose of institutional review board (IRB) review; and (iii) the ethical significance of the business rules or “terms of use” of social media platforms. In our target article, we take an approach to the ethical evaluation of social media recruitment that we term “nonexceptionalism,” which involves considering analogous offline recruitment scenarios and applying traditional research ethics considerations. Eric S. Swirsky takes issue with this approach in his commentary, saying that we “beg the question of whether use of social media should be evaluated differently from other forms of recruitment” and that our “methodology falls short as a stand-alone tool for IRBs or investigators to identify and assess some of the most salient ethical issues facing the use of social media for recruitment” (Swirsky 2017, 15). Swirsky goes on to endorse a “sociotechnical” framework for evaluating social media recruitment, which emphasizes social media as a “socially constituted” medium, arising from the “complex interplay between individuals, technology, and society” and that considers technology as designed and as used to determine what, if any, unanticipated negative consequences result from its use (Swirsky 2017, 15–16). In light of this critique, we reiterate two justifications in favor of nonexceptionalism, one theoretical and one practical (Gelinas et al. 2017). The theoretical justification is that the general ethical principles governing online and offline y Co-lead author. Co-lead author. Dr. Pierce’s current affiliation is Brunel University London, School of Law. Address correspondence to Luke Gelinas, Petrie-Flom Center, Harvard Law School, 23 Everett St., 3rd floor, Cambridge, MA 02138, USA. E-mail: lgelinas@law.harvard.edu z ajob W1 The American Journal of Bioethics recruitment are the same, namely, the Belmont principles of respect for persons, beneficence, and justice, which applied in this context particularly demand respect for the privacy of social media users and investigator transparency (Gelinas et al. 2017). Encouraging IRBs and investigators to consider unintended consequences of using social media in research, as Swirsky’s framework stresses, is laudatory, especially since the potentially negative consequences or “adverse events” of online recruitment may differ from those of offline recruitment. However, this is fully compatible with the approach we recommend, to the extent that the unintended consequences may raise ethical concerns that deserve consideration. Perhaps Swirsky is suggesting that the general ethical principles of respect for persons, beneficence, and justice are insufficient, on their own, to evaluate the ethical import of those consequences or social media recruitment generally. But we do not believe this to be the case, and Swirsky has not suggested any additional or alternative principles. Thus, assuming that a sociotechnical framework would simply involve a sensitive application of the ethical principles of respect for persons, beneficence, and justice, this would count as nonexceptionalist in our sense. From a practical perspective, our methodology is supported by the fact that finding analogies to offline scenarios where researchers and IRBs are more familiar with application of the relevant ethical principles can help orient them to salient issues in a potentially unfamiliar context. That said, as indicated in the target article (Gelinas et al. 2017), part of the reason to compare online and offline recruitment scenarios is to help isolate and illuminate differences that require further scrutiny. Far from obscuring differences, our approach makes them explicit so we can evaluate them more precisely. Our methodology is thus compatible with recognizing that social media may differ in important ways from other communication mediums and forms of interaction, for example, in terms of its degree of connectedness and the tendency toward self-disclosure to unfamiliar people; we further acknowledge that applying research ethics guidelines will require careful attention to these differences as well as to how particular social media platforms work, including sensitivity to their internal culture and norms. Swirsky’s deeper concern may be with background risks inherent in all social media use, not just social media research recruitment, and privacy risks in particular. “Researchers cannot,” he says, “control user privacy, and social media providers are hell-bent on obfuscating and eroding it to get at user data,” and further asserts that we condone “taking advantage of the same vulnerabilities as social media peddlers” (Swirsky 2017, 16). A. L. Bredenoord and M. Boeckhout echo this concern, claiming that it does not suffice to claim that “possible side effects of research recruitment from online tracking are simply part and parcel of the ‘background risks associated with social media use’” and that “questions about moral obligations pertaining to research recruitment in social media are . . . closely intertwined with questions W2 ajob about moral obligations of social media platforms themselves” (Bredenoord and Boeckhout 2017, 30). We agree that researchers should avoid complicity in clearly unethical practices and that ethically suspect background conditions should not be used as a baseline from which to measure research risks. However, we disagree with any assumption that social media is on balance ethically problematic, since it has genuine benefits that for many people outweigh its privacy risks. Moreover, social media users have already made a risk–benefit decision in favor of social media use and accepted its risks. In general, when evaluating recruitment proposals, the IRB’s responsibility is limited to evaluating the risks and benefits of the recruitment strategy itself and any difference in risk/benefit between it and background conditions that individuals have already accepted. Two analogies may help to make this point. Imagine a research study whose target population is intravenous (IV) drug users. In this situation, IRBs are not responsible for considering the risks of IV drug use for this population, nor do researchers necessarily incur ancillary duties of care by (say) recruiting from designated safe injection sites. Similarly, when evaluating recruitment in hospital settings, IRBs need not weigh the background risk of (for example) hospital-acquired infections in their deliberations. While researchers have an obligation not to compound social media’s privacy risks (Gelinas et al. 2017), it would be overly paternalistic and outside the purview of the IRB to second-guess individuals’ voluntary choices to engage with social media by providing special protection against background (i.e., nonresearch) risks that they have already accepted in their personal lives. We acknowledge that in reality people often fail to comprehend the range of possible risks associated with social media, but we do not agree that this fact justifies further protection from IRBs as a form of “soft paternalism.” While the extent to which the public understands the risks of social media is an empirical matter, it seems likely that by now many members of the public at least comprehend that their information is being collected and tracked by social media platforms, given (among other things) how common online personalized ads have become. In addition, all social media users have the opportunity to learn how social media platforms will use their data prior to joining them. But finally—and most critically—IRBs can only do so much; insisting that they must protect individuals not only from risks unique to research but also from all possible background risks of social media goes too far, and would have serious implications for the research enterprise Finally, the preceding discussion reinforces the need to distinguish, as we do in the target article (Gelinas et al. 2017), between what social media users might in fact believe and expect, on the one hand, and what would be reasonable to believe and expect, on the other. While researchers and IRBs have reason to honor the reasonable expectations of social media users when evaluating recruitment strategies, expectations without foundation in fact carry little if any ethical weight. This raises the May, Volume 17, Number 5, 2017 Social Media as Recruitment Tool: Ethical Issues question of how to determine which expectations should count as reasonable. In the target article, we point out that website policies and “terms of use” can form a basis for reasonable expectations and are to that extent ethically relevant (Gelinas et al. 2017). In response, Galbraith (2017) claims that website terms of service have “little to do with ethics” on the grounds that they are often complicated and that many people do not in fact read them—a concern shared by other commentators (Bredenoord and Boeckhout 2017; Swirsky 2017). We acknowledge that many social media users do not read or comprehend website terms of use, which is why we do not claim that terms of use are the only source of reasonable expectations, or even the most important. Reasonable expectations arise in multiple ways, perhaps most prominently from the cultures developed on particular sites among their users. This is why, as Abbas Rattani and Amelia Johns stress in their commentary, communicating with site moderators can be so valuable, as they typically have insight into the shared norms, mores, and values of the online communities they represent (Rattani and Johns 2017). But terms of use can also play a role in fostering common understandings and norms of engagement: When individuals do read and understand “terms of use” that, for example, prohibit research activities on a given platform, it is reasonable for them to expect that other users of the site who have agreed to the same terms do so with the intention to abide by them and that the site will take steps to enforce them. In our view (Gelinas et al. 2017), the ethical weight of expectations based on terms of service is not dispositive; there may be overriding reasons for IRBs to permit research that conflicts with website policies (with input from institutional and legal counsel). For example, in certain situations an IRB might justifiably permit research that conflicts with website policies when the research is very important, there is no other way to conduct it, and other relevant conditions are met. But this will involve balancing the importance of the research against the ethical risk of conflicting with users’ reasonable expectations, in addition to legal and prudential considerations. Recruitment to research is challenging, and underenrollment carries distinctively ethical concerns, including delaying the acquisition of socially valuable knowledge and exposure of participants to unjustified risks in studies that do not produce generalizable knowledge. Social media hold great promise as a form of recruitment medium but may be at risk of being underutilized due to lack of specific regulatory and ethical guidance on how to review and implement social media recruitment strategies. Our target article addressed this gap by May, Volume 17, Number 5, 2017 proposing an ethical framework for evaluating social media that is theoretically well grounded and practicable to apply. In this reply, we have further defended our ethical framework, argued that general background risks of social media accepted by individuals already using these platforms should not be the subject of IRB review, and clarified the different sources of reasonable expectations for social media users and the ethical import of website terms of service. We are pleased that the ethical and regulatory issues surrounding social media recruitment are getting the attention they deserve and hopeful that this will contribute to greater adeptness in identifying novel elements and potential risks of social media and will facilitate the review and use of this important recruitment tool. FUNDING This work was conducted with support from Harvard Catalyst j The Harvard Clinical and Translational Science Center (National Center for Research Resources and the National Center for Advancing Translational Sciences, National Institutes of Health Award UL1 TR001102) and financial contributions from Harvard University and its affiliated academic health care centers. The content is solely the responsibility of the authors and does not necessarily represent the official views of Harvard Catalyst, Harvard University and its affiliated academic health care centers, or the National Institutes of Health. & REFERENCES Bredenoord, A. L., and M. Boeckhout. 2017. Ancillary care obligations for social media platforms. American Journal of Bioethics 17(3): 29–31. Galbraith, K. L. 2017. Terms and conditions may apply (but have little to do with ethics). American Journal of Bioethics 17(3): 21–22. Gelinas, L., R. Pierce, S. Winkler, I. G. Cohen, H. F. Lynch, and B. E. Bierer. 2017. Using social media as a research recruitment tool: Ethical issues and recommendations. American Journal of Bioethics 17(3): 3–14. Rattani, A., and A. Johns. 2017. Collaborative partnerships and gatekeeping in online research recruitment. American Journal of Bioethics 17(3): 27–29. Swirsky, E. S. 2017. A billion tiny ends: Social media, non-exceptionalism, and ethics by association. American Journal of Bioethics 17(3): 15–17. ajob W3