2015, > la i Below are my decision and comments about this application. i seseeeecs ' After much deliberation, [am affaid that I can not approve this application, The concerns that Thave about the research can not be restfied and I do not feel comforsable approving a project that includes aspects that are worrisome tome. Lappreciate the efforts that the researchers went to address my first set of comments, However, [ am not convinced by their argument about consent and participants being made aware of their right to withdraw from a research project at anytime. I am sympathetic to the general argument that some data are available for research purposes without consent having been given by the people in the dataset. For example, government date, schools data, and so forth. However, the key difference from that sort of publicly available data and this project is that there is a gatekeeper who reviews a proposal/request for the data and does the anonymising the data, That gatekeeper plays an incredibly important role in safeguarding and securing the data. The application and response have not clearly identified such @ gatekeeper. ‘And, the response seems to put the onus of the gatekeeping on the research team, There are limits to the extent that one can use data for research purposes without direct consent, For example, if one wants to compare data from one government agency with another, then more strict procedures are required. And, if one wants to compaze data from a research intervention/study to well as existing data, then one needs to get consent directly from those involved to do that, My concems here is that consent has been thought to be granted in a way that falls far below the ethical expectations of the university. Clear information sheets and consent forms that allow the participant to agree to specific aspects of research, 9s well as clear guidance about participants’ right to withdraw are an important aspect of the consent process not followed for the participants and no opportunity relsted to declining consent is given to the Facebook ‘friends’. [ worry about this because I do hot see olear safeguarding for vulnerable groups (eg, children, people with disabilities, ets.), This concer js magnified because the information given i this study could involve criminal behaviour (e.g., underage adults liking alcohol pictures or illegal drug references). : ‘The researchers have made @ case thet Facebook allows its users to set their privecy settings to avoid being part of the study, The researchers seem to beclaiming that understanding these settings is clear to all users. It is aot, Even as well-informed, long-time user of Facebook, I find the setting confusing and I know thet many othersdo as well. Facebook’s privacy policy is not sufficient protection to address my concerns 1 I c's Sse th sven approved an application. [ have taken a long time fo return-my decision and comments because I do not take this decision dightly. T/have read the paper published last year in the Proceedings of the National Academy of Soiences (Kranier, Guillory, Hancock, 2014), that really kicked off discussions about using Racebook data forresearch. In response to that controversy, the editor of that journal expressed a goncernzelated to Facebook's consent procedures. The editor points to:Cornell University’s ethical review of the project. Comell confirmed that it did not review the projeet because the researchers were ‘not directlyResponse to the appeal from] provided on the request of the Chair. { can't make the meeting but | am inclined to support the original decision of the psychology committee. 4 Members might care to look at httos:/Avww.a fault Fallacy L.ndt for some recent work on real US consumer attitudes to the collection of consumer data for sale to, marketers. One simply cannot assume that commercial databases are kosher; one must look at the details. ‘Anonymisation can be harder than they seem to think, and data from which medical facts about identifiable individuals can be inferred must be treated as sensitive. It's also somewhat ridiculous to claim that Facebook friends aren't people, when they clearly are. It also not the case that material shared with lends "published" lagree wth that Fa + consented, nor had any opportunity to withdraw from the study. In oe lll csiock share kes tects ease; you eh ep catching what your friends have. If there are bad apps, or malware, or even dodgy marketing offers, ‘they get passed along through friendship networks. An ethical approach to using social network data hhas to take account of this. You can't consider consent to be contagious. It's probably Ok to use social networksfor subject reéruitment, as we've been doing that for decades ‘anyway (it's what snowball sampling is about). But once you have persuaded someone to run your Facebook app, you can really only colléct that subject's data. What his or her friends have disclosed Is by default disclosed to “friends” only, that is, with an expectation of confidence. Itis perfectly true that Facebook is rather deceptive on this and creates the appearance of a cosy and confidential peer group enviroment, as a means of gulling users into disclosing private information that they then sell to advertisers, but this doesn't make it right for an ethical researcher to follow their lead In short, the committee got it broadly right. That at least is my take on the matter. 08 July 2015,