[Air-L] irb approach to data like panama papers / wikileaks / etc?

[kalev leetaru]

Thank you to all of you who reached out to me with your thoughts and
experiences or connected me with others who did. I ended up with so much
great material I ended up pulling it all together into a column to start
with while I digest into a broader study:

http://www.forbes.com/sites/kalevleetaru/2016/06/17/are-research-ethics-obsolete-in-the-era-of-big-data/

In particular, the range of responses I got from researchers both in the US
and abroad was quite eye opening, as were NSF's comments that one must
submit a formal FOIA request to receive any IRB approval information it
holds on an award.  The differences I heard from older versus younger
faculty, even within the same department at the same institution and same
field of study were also quite striking and suggests further research is
needed on whether young faculty, growing up in the share-everything world
of today are potentially going to reshape how we view research ethics
moving forward.

Anyways, thanks again to all of you who responded!

~Kalev


On Fri, May 20, 2016 at 3:17 PM, kalev leetaru <kalev.leetaru5 at gmail.com>
wrote:

> Hi, for a study I'm doing I was wondering if people on this list might
> could contact me offline at (kalev.leetaru5 at gmail.com) with any pointers
> or personal experiences of how their IRBs are addressing the issue of
> academic research using data from data breaches. Ie, the Panama Papers,
> Wikileaks, the Sony emails, Ashley Madison data, and any of the myriad
> other datasets now floating around.
>
> Researchers from several major US institutions I've spoken with thus far
> have shared IRB approval forms with me that show their particular IRBs
> accepting the argument that any data, no matter how sensitive, which can be
> downloaded openly from the web, is accepted as "public domain" and falls
> under an IRB exemption of existing public data. In particular, the IRB
> approvals I've seen accepted that any personally identifying information in
> the datasets, no matter how sensitive, is exempted due to its being public
> access now.  I'm thus extremely curious whether this is a general trend and
> how other IRBs are treating the use of hacked datasets which are widely
> accessible online.
>
> In an era in which academic researchers can easily access with a few
> mouseclicks breached medical records to password archives to sexual
> preferences to financial statements to just about any kind of dataset you
> can imagine, there are all kinds of questions around whether those datasets
> should be available for academic research and I'm curious how IRBs are
> leaning right now.
>
> I realize there are a myriad professional ethics guidelines out there put
> forward by the various professional societies, but from browsing recent
> journal issues from a cross-section of fields including the social,
> information, and computer sciences, I've turned up countless papers using
> breached datasets, and those papers in fields that traditionally use IRBs
> have all claimed full IRB approval, while I've found in the computer
> sciences that few of the researchers I've spoken with thus far have either
> heard of the IRB or believe that their research is subject to IRB.
>
> Thus, my main interest is really at the institutional level - how are IRBs
> and universities handling the issue of their scholars using data from
> breaches like Wikileaks, Panama Papers, Sony emails, breaches from
> government agencies, etc?  I'm also interested for those of you who are
> journal editors or who have gone through that process, how do you handle
> the issue of whether to publish a paper using something like Wikileaks data
> and, *in particular* how do you handle the issue of hosting portions of the
> breached data in the replication archive of your journal's website?
>
> I know this can be a deeply impassioned area of discourse and for my
> particular study I'm *solely* focused on how institutions, especially IRBs
> and also journals, are currently handling the issue of breached data like
> Wikileaks/Panama Papers/etc in academic publications.
>
> Thanks so much in advance!
>
> Kalev
>