WEBVTT

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Hi.

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Hi.

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Oh, it's good to find you.

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All right.

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So Agata, here, works
with our Open Science

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group in our library.

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And we're going to
talk about privacy,

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which is super
important, because we're

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doing human subjects research.

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But first, let's take a
step back, what's privacy?

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Well privacy is protecting
the personal information

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of human subjects.

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Every living person,
me or you, we

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have-- there are certain
types of information about us

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that can lead to
identify us as people.

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So for example my name, or
where I live, or how I look.

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All that is personal information
about me, that can identify me.

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So we want to protect the
privacy of our research

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subjects by protecting all the
personal information about them

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that we might collect.

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That makes sense.

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So just like we talked about
with our data lifecycle before,

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we have personal
information in that.

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OK, but what are their words
other than personal information

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are important to
understand, when

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you're talking about privacy?

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So personal information
is definitely

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this most critical term, in
all privacy issues in research.

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So personal
information, as I said

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is, any bit of
information that can lead

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to identifying you as a person.

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But also there are different
types of personal information.

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So there is general personal
information, like for example,

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my name or my address.

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But there are also
these special types

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of personal information,
that might be

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sensitive information about me.

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Like for example, information
about my health conditions,

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or biometric information, like
my fingerprint for example.

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So this sensitive
information-- that

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may require us to be extra
careful when processing it, as

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opposed to just general
personal information.

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OK so general personal
information, would be say,

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my face in a video--

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For example.

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--in one of our data sets.

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And then if something
is sensitive,

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it might be anything
captured from a sensor

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about my heart rate or--

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anything that maybe is a
little unique in a survey.

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Right so anything
that can reveal

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any particular information
about, for example your health,

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but also other types
of information.

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For example, here in
the European Union

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we consider also your ethnicity,
or your racial or political

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views, for example,
or religious views,

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as sensitive information.

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Or your sexual orientation can
be also sensitive information.

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So there are different
bits of information

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about you that can be
considered sensitive,

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and in the special category.

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OK so this is really
a safety issue.

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Yes.

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And then how, as
a researcher, do I

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make sure that my
research subjects

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feel safe and understood
when I'm doing research?

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Right that's so important.

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So our legal basis
for processing--

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collecting and processing
personal information

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from our research
subjects is consent.

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So we collect consent from
our research subjects.

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And this consent
needs to be voluntary,

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so we cannot force
them to do anything.

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And it needs to be
informed, so they

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need to know what
they're signing up for.

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They need to get sufficient
information about the research

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project, that they will
be participating in.

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And most importantly, we need
to have documented consent.

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So we need to have proof that
our research subject consented

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to participating
in this research.

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So it's not enough to
just ask them, hey,

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do you want to participate
in this research.

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And they will say,
yeah sure, but we

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don't have it on the record.

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They need to sign a
formal consent form,

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and document where
they're saying,

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I agree to participate
in this research.

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Or we need to have, for
example, a video recording

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of them saying it, so that
we have a documented consent.

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That sounds a lot like the
terms I used on my phone, right?

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Yeah.

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That makes sense.

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Of course, so some data
protection regulations

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apply of course, to not
only to research, but also

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to other areas where--

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of life, and of
digital life right now,

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where we collect data.

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Absolutely.

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All right so I need to make sure
I know what kind of information

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I'm collecting--

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Right.

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--and then I need to make sure
I inform people that are coming,

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and then I need to make sure I
get consent in the right way.

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How do I get help with
this whole process?

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Right so it might all sound
a little bit daunting.

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And sometimes it also sounds
scary to hear about things

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like, oh privacy, oh we need to
be careful, oh data protection.

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All these things of course,
as a researcher or a student,

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maybe you don't
have full knowledge

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about all these
regulations around that.

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So sometimes I would
suggest to you,

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first of all go to either your
direct advisor or the person

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that is leading the project
that you're working on,

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where you're collecting data.

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But there is also
other help for example.

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I work in the open
research group

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here at the university library.

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And we have a whole team
of research data experts

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that can help with
answering questions about--

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am I following the
right procedures here?

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Is my consent form
correct for collecting

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this particular type of data?

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But we also work
together with lawyers

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that help us when very
particular legal issues arise

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around collecting personal
information from the research

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subject.

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So we can also get
advice from them on that.

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OK so just like how I'm
planning everything else,

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crafting my research
questions and my project,

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I should plan in a lot
of time in advance.

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We're doing research
because I might

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have to go and ask questions
to different legal entities,

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or make sure I have
all of this set.

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Right and also remember
that, of course

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if you do not collect
any particular types

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of personal data or any
particular very sensitive

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personal data, then
you will probably not

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have to consult
with-- for example

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legal entities or lawyers.

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But of course,
preparing the format

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of the consent forms, preparing
all the information that you

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will give to your
research subject

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for collecting that
data, does take time.

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And you need to
prepare for that.

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And then lastly, remember
that if you actually

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do not collect any
personal information,

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then you don't really need
to worry about all that.

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And sometimes there are
projects where we do not really

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collect-- we collect all the
data completely anonymously.

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And then we don't need to worry
about all the privacy and data

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protection issues.

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And then finally, if you
do collect personal data,

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you can always
anonymize the data.

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Once it's collected,
and you want

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to work with the
data in a safe way,

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you can just remove all
the personal information

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from your data, and then
work on anonymous data.

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Wow, that's a lot to consider.

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But it sounds like
there's help available--

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Absolutely.

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--and every project is unique.

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But this is something we
should definitely think about

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in our project planning phase.

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Yes.

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All right, thank
you for your help.

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Of course, no problem.

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See you later.

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Bye, thank you.

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