Kelly Edwards: Yeah, thank you everyone.
And I want to close just by bringing us back to a couple -- our meeting objectives and
really the purpose that the organizers had brought to us to kind of set us up for tomorrow.
And as I do that, I’m also -- our final, final thing we’re going to do is everybody
here gets literally a final word: not a final paragraph, not a final run on sentence, but
an actual final word or phrase of something that you’re taking away from today.
Could be sort of, this -- what’s the feeling that you’re left with?
And as you know, some of us might be frustrated, confused -- sort of, you know, soporific.
It’s -- but it kind of -- but what is one thing that you’re taking away from today
that you really want to get your -- you want to take forward into your work and your practices,
perhaps into the conversation tomorrow?
So, we’re going to go around the entire room quickly and ask everyone for a single
-- just to give voice to that.
As you give some thought to that, I just want to remind you the objectives for this meeting.
The organizers were really clear with us and the -- as we were thinking about the planning
was, they really didn’t want this to be two days where we argued about definitions
because we have had those meetings, and people have written publications about it.
And so, I think the organizers asked us to take -- kind of take a leap of faith.
In the workshop purpose on your agenda, they have stipulated a definition of Citizen Science.
We understand that getting conceptual clarity around, “Well, what are the implications
of that?”
Can we extrapolate principles or practices?
What does that look like?
You know, what’s the family of research that that might cover?
It’s a broad definition.
I understand that that might be the conceptual clarity work that we need to do here next.
But just, as far as definitions and terms, that’ll be less where we want to focus.
But, our three areas of emphasis that they really asked us to stay pretty crisp on is
-- this is a meeting about Citizen Science; it is a meeting about ELSI, and it is a meeting
about NIH-funded research in this space.
So, the explicit question we’re being -- we know that there’s long, long histories of
Citizen Science practices going on out in the world and are going in the world today.
The question before us is, what can NIH do in this space?
So, what can NIH do with their funded research initiatives within some of their practices?
Are there particular ELSI issues and, you know -- specifically, that we should take
on for empirical study, for conceptual work that would really help advance the field and
the practice in this way?
So, those -- I just want to kind of -- as we take -- kind of chew on what we heard today,
think of the so many examples that people have generously shared with us today, and
start to really crystalize that into, “What does this mean for NIH funded research?”
And that’s really where we’re going to ask you to go tomorrow.
We have a final panel kind of taking -- we’ve taken this whole arc of a research project,
and so we’re going to take -- the final panel is going to take us into that final
piece of -- what can be a final piece of a research project of dissemination and obligations
that happen after research.
But then, really a book of the morning is going to be in small group discussions, and
we’re going to be asking you to engage with each other to really dig into, what ELSI issues
should NIH be -- what is NIH in a position to address, and what are some research questions
that, within Citizen Science and ELSI, that NIH could -- and some of us involved in research
could -- take on?
So, I just wanted to plant that seed because you guys are going to get frustrated with
me again tomorrow because those are going to be fast conversations.
So, I’m going to move you along before you’re done having them, so you might chew on some
of that as you have a glass of wine tonight or as you sleep and dream.
And come in kind of ready to -- because I think what our hosts are asking us for is
some pretty concrete advice and guidance.
And so, our goal -- and in the final session, Jeff Kahn’s going to help us get there,
too -- what’s our action plan?
What’s our action plan or recommendations for NIH?
But then our own personal action plan, too, for all the organizations or places where
we work and live that we might be taking away from here as well.
So, just wanted to kind of focus us on that charge for tomorrow.
Can I -- any of the organizers, is there anything else that you’d like to say to set us up
for tomorrow or close out today?
Charlisse, or David, or Liz, or Jennifer?
We good?
Cool.
Dave Kaufman: Just thanks for hanging in with us all day
and thinking so much on our behalf.
Kelly Edwards: Great.
Well, thank you to the organizers for bringing us together and for bringing such a diverse
group of folks together.
We really appreciate that.
So, final word.
This goes fast.
We’re just going to round-robin it.
I think, Liz, I’m starting with you and that corner, [laughs] only because we’re
going to kind of do this “U.” I’m going to move the microphone back here because I’m
getting all of us back here and then up the side and back down the middle.
Okay?
So, just one word or phrase that you’re taking away from today.
Female Speaker1: Opportunity.
Kelly Edwards: Thank you.
Female Speaker2: Empathy review.
Female Speaker 3: Gratitude.
Kelly Edwards: Sandra.
Sandra Soo-Jin Lee: I can only do one word?
Kelly Edwards: Or a phrase.
Sandra Soo-Jin Lee: Okay, trade-offs and values.
Pearl O'Rourke: Need some [unintelligible].
[laughter]
Pearl O'Rourke: There’s a dash between all those.
Kelly Edwards: Okay, good.
[laughter]
Female Speaker 4: Shared research.
Male Speaker 2: I need tomorrow.
[laughter]
Female Speaker 5: Innovation?
Kelly Edwards: Thank you.
Let’s jump through here .
[inaudible]
[laughter]
[inaudible]
Female Speaker 6: Can you use your microphones?
Or is nobody talking?
[laughter]
Kelly Edwards: Yeah, I think microphones would help all of
us in this room, too, and people are still listening to us on the webinar.
Thanks.
Female Speaker 6: You have to repeat --
Kelly Edwards: No, no, no, we don’t.
We can just keep going.
Female Speaker 6: Oh, okay.
Female Speaker 7: Resonance across domains of research.
Female Speaker 8: Focused confusion.
Female Speaker 9: Assume citizens are competent.
Kelly Edwards: Come back here, Devon?
Female Speaker 10: Grateful.
Kelly Edwards: Go ahead.
Male Speaker 3: Keep pushing.
[inaudible]
Kelly Edwards: I think mine is learn from what’s working.
Female Speaker 11: Subject versus subject.
Female Speaker 12: [inaudible]
[laughter]
Kelly Edwards: -- active recorder here.
I’m going to come around the outside and come back down the middle.
Steven?
Steven Wing: Patient centered [inaudible].
Female Speaker 13: Use your microphone.
[laughter]
Female Speaker 14: Questioning our assumptions.
Male Speaker 4: Healthy dialogue.
Female Speaker 15: I’m changing it quickly.
Flexibility.
[laughter]
Female Speaker 16: What needs more investigation.
Female Speaker 17: Positive disruption.
Female Speaker 18: False dichotomy.
Female Speaker 19: Context.
Female Speaker 20: The importance of diversity to define this
-- these issues.
Female Speaker 21: Leveling the playing field.
Male Speaker 5: Scientists serving citizens.
Male Speaker 6: Whose health?
Whose research?
Male Speaker 7: Personal data text.
[laughter]
Female Speaker 22: Who owns the data?
Female Speaker 23: Vocabulary matters.
Female Speaker 24: Listening.
Male Speaker 8: No rush to write rules.
[laughter]
Male Speaker 9: Give it a chance.
[laughter]
Male Speaker 10: Ambiguity in understanding harms.
Male Speaker 11: Democratizing science.
Female Speaker 25: Turning talk into action.
Kelly Edwards: Did we get everybody?
Right on.
Nice.
[applause]
Excellent job.
And we came in under the wire.
You guys were spectacular.
One housekeeping thing: we start at 8:00 a.m. tomorrow, not 8:30, so half an hour earlier,
so shuttles will be a half an hour earlier.
It’s because we get done earlier; we get done by 3:00.
So, thank you everyone for your active participation today.
[end of transcript]