[Air-L] research regs.
Ed Lamoureux
ell at bumail.bradley.edu
Sat Aug 11 19:35:15 PDT 2007
please allow me to stop arguing in the abstract for a moment [I sort
of gravitate toward hypotheticals]
If you have a chance, have a look a the U of Illinois, IRB protection
of human subjects stuff at
http://www.irb.uiuc.edu/
http://www.irb.uiuc.edu/?q=irb-admin/introduction.html
Especially helpful is the download of the "NEW" IRB Application for
Exemption. This is the document that controls the process, for the U.
of I., of telling researchers that they can go ahead and do what they
plan to do cause it fits under the Federal categories for exemption
from full review. Even getting the research approved via this form
does not release the researcher from best practices; but it does
recognize that certain kinds of work (descriptive, observational,
etc.) are in a category that pose little risk to subjects so may be
done without full board review and constant, repetitive, oversight.
before I highlight a couple parts, please note that I'm not at the U
of I . . . I'm only familiar with their stuff cause I treat them as
a model due to their longstanding involvement with ethnography. See
their long term ethnography of the university project:
http://www.eotu.uiuc.edu/what/index.htm
I think this is an IRB that pretty clearly understands, via
experience, ethnographic methods. These guys don't make law for
everyone. But I think they are a good model and they are breaking
ground in the attempted colocation of human subject protection stuff
across disciplines. Some highlights in the application for exemption:
*NEW* IRB Application for Exemption: http://www.irb.uiuc.edu/files/
exemptform.dot
(this will open as a fillable form in WORD)
4. Research involving the collection or study of existing data,
documents, records . . . if these sources are publicly available or
if the information is recorded by the investigator in such a maner
that subjects cannot be identified, directly or through identifiers
linked to the subjects. Note: in order to be eligible for this
exemption, all data, documents, records, or specimens must exist
prior to IRB review and must have been collected for purposes other
than the proposed research. (To qualify for an exemption in this
category, the proposed research must be strictly retrospective).
Later in the boxed summary sections:
5. Please explain how confidentiality will be maintained during and
after data collection. If appropriate, address confidentiality of
data collected via e-mail, web interfaces, computer servers and other
networked information.
7. Individually identifiable information. Will any identifiable
information, including images of subjects, be published, shared, or
otherwise disseminated? . . . NOTE: if yes, subjects must provide
explicit consent or assent for such dissemination . . .
Elsewhere, copy of their informed consent requirements: http://
www.irb.uiuc.edu/?q=informed-consent/ElementsOfInformedConsent.html
+++
we can, then, quibble a bit over what is or isn't public and you may
not be forced to stay within UI's parameters that the data be
"historic," But my point is, and has been all along, that working in
the field does not exempt one from confidentiality, informed consent,
and protection of subjects. One might, for various reasons, get off
the hook for SOME of it . . . but when the data used can be traced
back to individuals (and MUCH web published data CAN BE). . . I think
in most places, using that data without prior informed consent might
well be frowned upon by many IRB committees.
GAWD I hope this makes it through the list's 10k limit. I'm having a
lot of trouble making meaningful points around that limit.
Edward Lee Lamoureux, Ph. D.
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