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


> if people *did* grant permission, obviously that's an entirely
> different situation. But if they didn't, James was doing entirely the
> right thing by refusing to turn over, wholesale, information
> communicated to him and him alone, to a wider body that was quite
> clearly not trusted by the people making these reports.
>
> On Mon, May 2, 2016 at 4:03 PM, SarahSV <sarahsv.w...@gmail.com> wrote:
> > On Mon, May 2, 2016 at 11:07 AM, Denny Vrandečić <vrande...@gmail.com>
> > wrote:
> >
> >> The protection of any personal or confidential information was, to the
> best
> >> of my knowledge, at all time guaranteed and has not been compromised.
> The
> >> official task force, set up by the Trustees, worked under the standards
> of
> >> keeping confidentiality, obviously. I thought this goes without saying,
> but
> >> I am explicating it.
> >>
> >> Was information passed to people on the task force without the original
> > sources' consent?
> >
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