[Air-L] research regs.

[Ed Lamoureux]

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.