Re: Question about ethics issue in researching abuse

[Brian Morgan <brianmorgan@xxxxxxxxxxxx>]

One issue the research board might want to consider is this:
I have corresponded with one list member, off list, on the
subject of reliability of diagnoses of Munchausen's by Proxy.
There is  concern about  the process by which diagnosis is confirmed.
The procedure appears to be inadequately research based, over-reliant
on 'profiling' of the suspected perpetrator and subject to
'base rate' statistical error producing high false positive rates
as was discussed on this list very recently in relation to abuse generally.

Thus when these adults were 'identified' as being victims of Munchausen's
by Proxy one might ask 'how?' and 'by whom?' and was there full expert
agreement on this.

Then there is the interesting question  of preventing the participants from obtaining the
full published dissertation.  It would not be unprecedented for individuals and family members
involved in an MSBP case not to be told until very much later about the publication
of details of their case, but it is most unlikely that they will remain in ignorance indefinitely.

There may be professionals involved in the case who disagree with the positive diagnosis
of Munchausen's by Proxy, who might have liked to have an input into the dissertation.

Furthermore, two cases do not seem enough for results to be statistically reliable and is the
effect thought to have been seen in one of the adults possibly generated by a false positive
allegation not a genuine one?

A very interesting topic.

Brian Morgan
Cardiff UK
Freelance Journalist










Dan Taube wrote:

> Dear List members,
>
> I am an IRB chair, and have come up against an interesting question that I thought some of you might have had occasion to have previously addressed. We have a student interested in conducting qualitative research with two adults who were identified as being victims of Munchausens by Proxy.  Her research would involve using standardized psychological tests and interviews with  these adults--one of whom has apparently been significantly affected by his/her experience, and the other of whom has experienced less signifanct effects. One of the study's aims is to clarify which areas of functioning are most affected. Aside from the issue of the utility and design of this study, the committee members (as well as the student) are concerned about one risk in particular. That is,  is there a way to prevent family members (or the participants, for that matter) from obtaining the full published dissertation, with its description of the testing data and potential for misinterpretation or !
mi!
> suse? We've recommended that, at a minimum, at Certificate of Confidentiality be obtained by the student to protect the raw, identifiable data, and that she, of course disguise the participants as much as possible. And with our typical request that researchers offer a summary of results to participants upon the completion of the study, we believe it possible to provide results in a manner respectful of participants sensitivities.  Nonetheless, it would be relatively easy to identify the study and obtain a copy of the dissertation--as the student must inform participants about her status as a student at our school, and dissertations are available in our library (not to mention DAI).
>
> If you have any suggestions about how we might address this risk so the student could adequately protect these participants, it would be appreciated.
>
> Dan Taube
> AIU-California School of Professional Psychology
> 1005 Atlantic Ave.
> Alameda, CA 94501
> 510-523-2300 ext. 128
> dtaube@alliant.edu
>
>
>