[Rdap] Data resulting from biosafety-related research: to publicly share or not?

[Agnes Jasinska]

Hi, Jon,

In my understanding, number one ethical (and legal) rule when dealing with
human subject data would be protecting the subjects' privacy. In practice,
that means *de-identifying the data*, i.e., stripping the data of any
identifiers such as names, emails, addresses, SS numbers, ID numbers, date
of birth, etc., and replacing them with unique research IDs. So that no one
can locate or use the data for a specific individual in that dataset. (In
my experience, this is done right away, even before data analyses, but
definitely before sharing the data.)

I would also consult the research study's *IRB approved protocol and
informed consent *for additional data protections that were promised to the
subjects.

And then *health-related data* and information in general are under
additional protections. If the IRB approved protocol doesn't cover them,
then perhaps you could reach out to the data repository you are planning to
use, and consult with them. Describe the type of data you have, and ask for
their guidance on what else should be done to the data before it can be
shared and reused. You could also find similar studies already in that data
repository and see what they did. It's possible that some data would be
restricted and not shared widely, or only shared by a special request by
and a special arrangement with the researchers who want to reuse it. Again,
the data repository should have more guidance on that.

I hope that helps.

Best,

Agnes

On Fri, Jul 24, 2020 at 4:19 PM Jonathan Petters <jpetters at vt.edu> wrote:

> Hi all,
>
> In working with a researcher who studies the airborne transmission of
> pathogens, I'm wondering about the ethics/rules around the public sharing
> of data resulting from such biosafety-related research.
>
> I've been looking around for clear guidance, and the most I've found so
> far is a vague statement from Nature: "It is a condition of publication
> that authors deposit their data in an appropriate repository, and agree to
> make the data publicly available without restriction, excepting reasonable
> controls related to human privacy or biosafety."
>
> Anyone else here have more clear guidance from an
> institution/funder/journal that I've been unable to find?
>
> I can ask our IBC contact here on campus, but thought I'd ask the hivemind
> first :)
>
> Jon
> --
> Jonathan Petters Ph.D.
> Assistant Director, Data Management & Curation Services
> Data Services, University Libraries
> Virginia Tech
> (540) 232-8682
> https://lib.vt.edu/research-teaching/data-services.html
> ORCID: 0000-0002-0853-5814
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-- 
Agnes Jasinska, Ph.D.

Data Services Specialist
Library & Information Technology
Research Services
Bucknell University

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