While *some* of research ethics comes from the medical world -
particularly from the Belmont report and the Western-centric research
atrocities of the last century - much of it does not. Things like the
Zimbardo and Milgram experiments have had a marked impact on our
conceptualisation of appropriate ethics and IRBs, and it is not
unusual for institutions to even separate out behavioural and social
studies from medical studies in training, IRB composition and expected
practices.

And yet the social sciences contain the same duties and
responsibilities around ethical principles that medical studies do.
The principles of confidentiality, of transparency to the participant,
of the participant taking the lead in defining what is and is not
acceptable. Ethical principles along these lines are a common and core
part of the IRB process, if you're involving humans, regardless of the
nature of that involvement. And I note that the current board contains
(not to single him out, but simply because he is the best example
Dariusz Jemielniak, full name *Dr*  Dariusz Jemielniak, who is an
_ethnographer_, one of the social fields of study that pays very close
attention to these things.

So it is not as simple as "James's experiences were shaped by his
medical background, other people did not have that". The need for
ethical principles is enshrined in a lot of fields, including not just
medicine, but those several other board members have as a background.
This should have been a known. I agree that there is apparently an
inadequacy in Board training, but I'm mostly amazed (and disappointed)
that the people who wrote Denny's statement didn't twig that,
actually, ethics in these areas are both paramount and much more
complicated than just "well my legal duty says..." for the
participants involved.


On Mon, May 2, 2016 at 10:44 PM, Nathan <nawr...@gmail.com> wrote:
> On Mon, May 2, 2016 at 10:11 PM, Justin Senseney <jsens...@gmail.com> wrote:
>
>> On Mon, May 2, 2016 at 5:33 PM, Oliver Keyes <ironho...@gmail.com> wrote:
>>
>> > +1 to that question, which is the biggest flag I have here.
>> >
>> > "The highest standards of confidentiality" is nice but, as you note,
>> > people presumably reached out to these individual Board members,
>> > rather than the whole Board, because they felt the individuals could
>> > be trusted a lot better than the Board as a whole. Which in my mind is
>> > totally understandable.
>> >
>> > If people reached out in confidence, demanding that their experiences
>> > and information be turned over to the entire Board - without noting
>> > that as a caveat when first interacting with the source, or without
>> > asking for the source's permission - well, I'd be cagey too. Anyone
>> > who has ever dealt with human subject research would be cagey.
>> >
>> > The perspective of human subjects research makes a lot of sense here.  A
>> lot of research studies are asking the question, can we share data between
>> studies now that we have the "cloud" technology to do it? In every case
>> I've seen, researchers have to explicitly ask for two consents, one to
>> collect the data from the subject, another to share it.  I would expect
>> anyone in the medical profession to operate the way James has.
>>
>> Most internal review boards won't even allow you to ask human subjects for
>> the broad ability to share their data, you have to identify the specific
>> place it will be shared, before you collect it.  In the US, these rules
>> come from Institutional Review Boards.  These IRBs function in a similar
>> way to the Board, by providing an independent level of oversight to medical
>> research, and are given a wide latitude to go as far as halt research
>> studies and punish misconduct, even though they are not medical researchers
>> themselves.
>>
>> I wish the Board had the same respect of confidential data that James has
>> shown, and that Institutional Review Boards throughout the research
>> community have when it comes to human data.  IRB members aren't necessarily
>> medical professionals, they are the same people you would find sitting on
>> any board.  So I think it's reasonable for us to ask the Board to treat
>> confidential data in the same way any IRB would, the same way James has.
>>
>> -Justin
>>
>>
> Justin - many of these elements of current research ethics, enforced in
> some instances by IRBs, have grown in no small part due to the regulatory
> environment around personal health information. The legal framework for
> information held by a corporate board member is very different. It may be
> that James' approach to confidentiality is drawn from his experience as a
> physician, but it perhaps speaks to inadequate board training that he
> discovered the import of the different legal environment only after things
> fell apart.
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