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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