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I am a member of a closed, fairly large private group on Facebook of former game show contestants. Several years ago, another member posted a Google Forms version of the Asperger Quotient test, asking group members to take the test, to report their overall score (anonymous), and to answer a few demographic questions on the form. After collecting about 300 responses, he shared the composite results with the group (who were enthusiastic about the idea).

I've since asked the member who composed the original post if he would be interested in turning this idea into a publishable research brief. I am a psychologist and faculty at a small university and could create the IRB/ submission at my institution. My issue, though, involves about informed consent. The data is collected, but he did not include an informed consent statement with his Facebook post. Should I scrap his data, create an informed consent, and then re-send out the AQ? Or do you think I should submit a request to the IRB asking to use the existing data? Thanks!

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  • $\begingroup$ Do you have personal identifiers? If so, the logical thing to do would be to contact the participants again to obtain new consent for the new purpose, no? Otherwise, given that no consent was given, I doubt this would pass as 'informed consent'. :) $\endgroup$ – Steven Jeuris Sep 2 '19 at 21:16
  • $\begingroup$ No personal identifiers (that I'm aware of)-- only the aggregate scores and results that were shared by the original poster (who wants to collaborate). so I'd really have no way to "reconsent" anyone. Only to send out another post (this time from me), with an informed consent page and IRB approval, asking people to please re-take the form. I would also be able to conduct item-level analysis (as it is now, there are only mean composite scores- (e.g., the 130 people who took this test scored X on average) and possibly recruit additional people who joined the group over the past several years. $\endgroup$ – Colby Sep 2 '19 at 22:07
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    $\begingroup$ @Colby In addition to my answer below, I'd say that with only aggregate scores the data are not likely publishable (or at least, I would personally never publish such data) for data integrity reasons. If that's the case I'd recommend you start from scratch. $\endgroup$ – Bryan Krause Sep 2 '19 at 22:10
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I'd recommend consulting informally with IRB staff at your institution beforehand, usually (and maybe especially at a smaller institution?) they are willing to help out a bit at the design stage. Once you find the right person to contact, I'd convey to them almost exactly what you've posted here (probably via email), plus a bit more background on the actual current form of the data.

IRBs can vary quite a bit on what they allow; there are minimum standards they are required to follow but I've seen IRBs go well beyond those standards at times. It may be that the IRB decides the data are anonymous enough and low risk enough that you don't even need consent; it may be that they won't allow it in any form unless you start from scratch (and contacting the people who originally participated may similarly not be allowed; you might be able to solicit the group but not the previous responders directly).

There is likely a blanket prohibition on you collecting data, then trying to go back and get consent to use it in another way, but your situation is a bit different in that you weren't the one collecting in the first place and the collection does not seem to meet the criteria for "research" at the time of collection.

These flow charts from HHS might help a bit if you are in the US. Following Chart 2 and then Chart 4/5, it is quite possible that this work could be exempt from full review (but at least at my institution, it is still the IRB that decides whether the exemption applies).

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    $\begingroup$ Thank you-- very helpful. This is a new one for me--and is at the intersection of several areas (pre-collected data, social media, etc.) Most of the survey takers posted their own scores in the comments on Facebook (not ideal) and the aggregates I'm working with were also posted. This could technically qualify as observational data, I suppose (posting on social media seems to be inherently public), but it's also a closed group (so it has some expectation of privacy). I'm thinking my colleagues on the IRB will have no idea what to do with it, so I'll probably just start from scratch. $\endgroup$ – Colby Sep 2 '19 at 22:20
  • $\begingroup$ @Colby Yeah, I agree with all you've just said. If it were some precious resource, like longitudinal data collected in a community over several years, I'd be strongly for probing all the edges of the law and IRB to try to make a case; as-is, it seems instead like a useful pilot study to help you direct your next steps. Best of luck! $\endgroup$ – Bryan Krause Sep 2 '19 at 22:28
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The other issue is whether it is a closed Facebook group or a public Facebook group. If it is a closed group then privacy issues do apply. Public groups are accessible by everyone, so broader social media rules apply.

Having said that, talking to your IRB about retrospective approval is essential. Some IRBs do not grant retrospective approvals full-stop, no exceptions. Not having identifiers or including people who have declared themselves or identified how they answer is also an important distinction as well that needs to be in your ethics application. I know some IRBs if they look at the questions and the fact that it is a survey are usually able to grant retrospective approval despite the lack of consent.

Putting a post and asking permission to do research would definitely be helpful. People can raise your concerns and this can be included in your ethics approval and communication with your IRB. Definitely communicate with the group and be transparent in the type of journals and conferences that you could be publishing in. I find details like that is helpful and encourages further engagement from the community. For some, research is a very new thing and they may never encounter an academic journal before. So having this introduction and being part of the scientific writing process can be quite exciting for the group. In some FB groups that I am in, research legitimizes and validates the difficulties that they are having. It gives them a voice when they previously feel unheard. Also, highlighting and educating about the strict privacy regulation of the journal and the IRB process is a great way to educate your group and the general public about research and scientific journals.

Edit: Not sure how I missed the comment about GoogleForms. GoogleForms is not universally accepted as confidential and adequately de-identifying for research purposes. Sometimes when people fill in the GoogleForm, their Google sign in might be collected which then makes the survey not confidential (make sure this setting is off and that this data has not been collected by accident). It is much harder to disprove data manipulation as the survey can be altered as well after being filled in or manipulated by the researchers without any metadata evidence, all of which makes IRBs and ethic boards very nervous and hesitant to approve research using GoogleForms. For countries which insists that the server of the data storage be in the same country, GoogleForm does not have this option - Google Support Question

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