(dramatic music)
- This whole event is the
final in a series of events.
It's been sponsored by a grant
from the Templeton Foundation
to Jennifer Doudna and Bill Hurlbut.
Who will be moderating the last panel,
so you'll meet him soon.
And we just want to thank
the Templeton Foundation
for their support in this
very important topic.
At the IGI we're a life sciences institute
but we also recognize the importance
of weighing on the way the
science fits into society.
And for that we're conducting research
and we're committed to public engagement
and stakeholder engagement
on these topics.
And what topic is more
important at the current moment
then editing the germine.
So what we're doing here today
is not so much a referendum on yes or no
but really trying to address
some of these bigger questions
about how do we involve
stakeholders and public's
in these big conversations.
To get this started
I am going to hand it over to Ben Hurlbut
who's going to tell you a little
bit more about that charge
what we're trying to accomplish today.
And then we'll get everything started.
(audience clapping)
- So thank you very much to
all of you who are here today.
Many of you have come from far and wide,
so we are most grateful
for your participation.
I'm just gonna say a few
quick words of framing
to get us started.
So as Lea mentioned,
this sort of occasion for
gathering us together here,
the developments of,
is the development of very
powerful tools of genome editing.
And in particular a
tool called CRISPR-Cas9,
where foundational work for
the development of that tool
was done here at the IGI.
This technology allows
targeted genetic modifications
of just about any being
from microbe to mammal.
There area myriad
extraordinary, promising,
and hugely valuable
applications of this technology.
And of course there are also those
that are ethically fraught.
And perhaps amongst the most
controversial among these
is the potential to modify
human gametes and embryos
to introduce genetic
changes into children.
Heritable genetic changes,
changes to the germline
that would be passed on,
not just to those children,
but to those children's children
and on down through the generations.
So this ability to make
genetic changes to the DNA
of future children raises far
reaching ethical questions.
Should it be done?
For what purposes and
subject to what limitations?
But just as crucially who
should decide these questions?
How should we as a human community
guide and govern these
emerging technologies?
A few years ago,
a group of leading thinkers
convened an international summit
on human gene editing and concluded
that we should not proceed
until there is, as they put it,
quote "broad societal consensus
about the appropriateness
of it's use and for what purposes".
Those words have caused a
certain amount of controversy
not least because
there's uncertainty about
what such a consensus would look like
and a skepticism that it
could ever be achieved.
Hence the question mark next to consensus
in the title of this gathering.
But these are both important questions
and yet seeking such a consensus
or at least engaging in the
kind of broad deliberation
that might move us in that direction
is surely a worthy aspiration.
And it's in that spirit that
we convene this conversation.
To contribute, in a small
way, to a larger imperative,
a larger effort to develop
sort of broader more expansive
and more inclusive dialogue
are the draws upon the
breath of human experience
and moral imagination.
And we're facing real challenges.
Scientific and technological
advances are proceeding
often without guidance from wider society
about what technological futures we want
and what futures we don't want.
As I'm sure everyone in the room knows
last year a scientist in China
created the first genetically
engineered children.
His aim was apparently
to race ahead of his
scientific competitors
but also to reshape and
speed up, as he put it,
the ethical debate.
But speed is surely not
what we need in this case.
We need thinking, and
reflection, and deliberation,
informed by the fullest
range of cultural and moral
and religious perspectives.
After all, the human future is at stake.
And yeah, to date most of the discussions
that have informed governance approaches
surrounding genome editing.
Have played out in expert
committees and summits
that have engaged a relatively
limited range of perspectives
these have been worthy
and important efforts
and yet insufficient and incomplete.
Surely expert input plays
a absolutely crucial role
in governance but as
multiple expert committees
who have convened these conversations,
have repeatedly affirmed,
expert judgment is insufficient.
We need a broader more inclusive dialogue.
But questions remain, how
should public debate proceed?
Through what mechanisms and processes?
Who should lead and shape it?
And even where it's taking place.
How should scientific
and technological agendas
and governance approaches
be tethered to public
deliberation and judgment?
Lest one or a few reckless scientists
take the reigns from the rest of us.
So our task today is to
confront these challenges
and explore possible paths forward.
We have the privilege of
engaging in the dialogue
about how to guild and govern
these emerging
technological possibilities.
Through a dynamic and quite diverse
group of participants in
a public conversation.
That will draw upon the
expertise of a range
of interdisciplinary
international range of people
from around the world.
But also that we hope and we intended
would include a much broader community,
in effect anyone who wished
to accept the invitation
to come and participate in the dialogue.
So this was meant to
be a very public affair
with a much larger
gathering of the public.
(laughing)
In the spirit of the
project of this meeting.
Unfortunately we had a
little bit of a lesson
in who has the power to shape debate
and it turns out it's the power company.
(audience laughing)
So, I think as everyone in the room knows
and people who are tuning
in from afar maybe don't.
The local power company,
Pacific Gas & Electric,
has deemed today to be the day
that they will turn off electricity
to the UC Berkeley Campus.
So we were supposed to have
gathered in a much larger room.
There were roughly 200 people,
members of the public signed up
to come and participate
in this discussion,
so it's a, sort of shame
and irony and even absurdity
that we've had to exclude that public
that this gathering was
intended to include.
And yet, never-the-less,
fortunately the web remains with us,
what would we do without it.
And so, at least judging from our numbers
of the people who signed up,
there are another, sort
of 250 people or so,
who promised to tune in and
we hope you are with us.
We encourage you to stay with us.
There are mechanisms
that I think Lea will say a bit more about
for participating in the discussion.
You know mediated, unfortunately by
the technological means of participation.
We would much rather that there
were more people in the room
but so it goes.
And so we are really
going to rely upon you,
those of you who are
out there in cyberspace.
To participate and
contribute to our dialogue.
One other quick thing.
So we were, one of the, sort of,
there are multiple complex, interwoven,
choreographed elements to this meeting,
all of which, have been
profoundly disrupted by PG&E.
But never-the-less,
one of the elements of this
meeting was a collaboration
between the organizers and Tomorrow LiFe
which is an emerging project to create
a kind of online video repository
that will kind of capture and
contribute to conversations
in this domain.
And so we'll hear a
little bit more about that
from the leader of the project
Samira Kiani during session three.
But there is a film crew here
who was meant to capture the conversations
both among the invited
experts and among the public
that would unfold in the coffee breaks
and our big and open space.
So, we are gonna sort of play it by ear
what they will do and how they will do it.
But never-the-less, they are here.
There are cameras floating around
and in-so-far-as you have
thoughts that you want to share
conversations that you would
invite others to listen in on
to eavesdrop on.
We invite you to find that camera crew
or if they come up and approach you
and stick the camera in your face.
To welcome it and you know recognize
that the things that are
said here are in the spirit
of sort of building collective dialogue
and that this platform
can serve as a means
to invite more people in to
the space of conversation.
By the way if you haven't
notice the releases.
The notices that are posted around saying,
you know, watch out
you're on Candid Camera,
that probably dates me,
but anyway, they are there.
So please take note that anyone
who's here may land on film
and if you have concerns about that
please do make them known to the film crew
and to the organizers.
Finally, I want to
reiterate some thank yous,
first of all to our sponsors
and to the core organizing
and hosting institutions
but also to the range of
people who have been involved
in pulling this thing together.
And I'm just going to read off the names
because each of these people
have put in crucial efforts.
Megan Hochstrasser, Kevin
Doxzen, Stephen Crane,
Dana Carol, William Hurlbut,
Lori Perko, Kristy Nordahl,
Yulia Golubovskaya?
How did I do?
Anyways, sorry Yulia.
Susan Jenkins, and then most
importantly, my co-organizers,
Julie Shapiro from the
Keystone Policy Center
and Lea Witkowsky, who's
incredible heroic efforts
to salvage this thing,
over the last 12 hours.
(audience applauding)
Are really the only reason
that we're all here and not,
you know, dispersed wandering
around doing our own thing.
So with that, I'll turn it back to Lea.
- So before we get into the first session
we wanted to kind of bring
everybody up to speed
on the science that we're
talking about here today.
It's gonna be very minimal,
there's actually not a lot of
science that you need to know
to be able to participate
in this conversation.
But we want to make sure
that the terminology that
you might hear here today
is something that you recognize
and are familiar with.
So to get started let's
quickly go over some basics
of what is this genome editing thing
that we're talking about.
So there's an analogy that I
think is very useful to use
you can think of a genome
as a book of instructions
and it has all the information
needed to create an organism.
It is organized within that
book into chapters and sentences
or you can think of that
as chromosomes and genes.
Genes are the sentences that contain
a full individual
instruction about one part
of creating the organism.
That terminology in the book,
the language is in DNA chemical basis,
so you may hear some terms
like genome, chromosome, gene,
DNA, that's what we're
talking about today.
And the editing mechanism,
there's many different sorts.
The kind that we're probably
going to talk about most today
is CRISPR, it's the new exciting version,
but there are also different ones,
and I'm sure there will be more to come.
The idea with genome editing is that
you can actually target
that sentence in the book
that you want to target and
make some modifications to it.
So if there's a mistake
in the way it's written
and you have a mutation, you
can target it, identify it,
and correct it, sort of like
a find and replace function,
if we were to translate
this from a paper book
into an electronic version.
(chuckling)
So that's the general concept,
is this ability to kind of
rewrite the instruction manual.
And beyond that there's
some other terminology
that you might hear, like
somatic cells and germline cells.
So the thing that we're focusing
on today is this concept
of rewriting the instruction manual,
the genome, of germline cells.
The distinction that we're drawing here
is one that is very useful
but it's also one that you
might hear challenged today.
It's one that I think we should consider
a little bit further.
But to define them,
somatic cells essentially
are the cells in your body,
of an existing person,
that have often been
differentiated to be things like
skin cells, bone marrow
cells, adult stem cells,
so they can also be created,
encouraged to divide and
become new types of cells,
but these are cells
that cannot create a new
person by themselves.
Germline cells on the
other hand are things like,
eggs, sperms, embryos,
and the progenitor cells
that create those.
And so the distinction here is that
if you modify the genome
of a somatic cell,
that modification will
stay with that one person
that you made the modification in.
Whereas if you modify a germline cell
that modification will be passed down,
both to the person that will
be created from those germline
cells as well as to all
of their descendants.
So there's something a little bit more
profound about modifying the germline
and that's what we're
here to talk about today.
As you can imagine this is
a very controversial topic
so you are going to hear
lots of different world views
lots of different
perspectives and takes on it.
We are welcoming all of those here today.
So in order to have a
productive conversation
we have some of these guidelines
for how to engage this topic.
So be empathetic, assume
that even if you disagree
the person is approaching
this with good intent.
Be curious, dare to listen,
so dare to try and understand
where somebody else is coming from.
Engage fully.
Disagree respectfully,
and dare to disagree,
so we want to hear different perspectives.
Share the floor, so when you
do come up to the microphone
and you want to ask a question,
please be mindful that there are others
that might also want to
share the floor with you.
Create common understanding,
so even though I just defined some terms
let's do our best to avoid
some technical jargon
so that we can speak to everybody.
And let the emcee, me, Lea
Witkowsky, and the moderators,
we'll have a timekeeper sitting
over here, do their jobs.
So we're here to spark conversation.
So there's one other group that I wanted,
in the spirit of engaging
different world views
and different perspectives.
We've heard a lot of
recognition and thanks
for the organizers
and for the Institute
for East Asian Studies
which is hosting us today,
and very kingly offered their facilities.
But I also want to recognize that Berkeley
sits on the territory of the Huichin
and I'm hoping that I'm pronouncing that.
The ancestral and unceded
land of the Ohlone people.
This land was and continues to be
of great importance to the Ohone people.
And we recognize that every
member here at Berkeley
and the community has continued to benefit
from the use of this land.
So consistent with our values here
of community and diversity,
we wanted to affirm Indigenous sovereignty
and acknowledge and make visible
the University's relationship
to Native peoples.
So, to get started,
we are going to be using
something called Poll Everywhere
and if you imagine this big auditorium
where we would have had
all these people (laughing)
sitting in the audience this
would have been a wonderful way
to get everybody sharing
their perspectives.
We're gonna do that still
because we want to hear from those of you
that were able to come today.
And there's a version on YouTube
that's being posted
where you all can join us
and input your opinions
and your perspectives.
So the question is:
what issues drew you to
this conversation today?
So let's set, kind of the frame of
why everybody came here
today to discuss this topic.
And you'll see that some of
the words start popping up
so we're seeing technology,
change the world,
ethics, future, access,
equal, dialogue, stakeholders,
power, change, eugenics,
groundbreaking, dialogue,
ooh yeah, now we're getting somewhere.
Lots of words, ah, ethics
is coming to the floor.
All right, justice, public's,
generations, inclusion, children,
The big ones right now are
dialogue, ethics, and society.
So that is exactly appropriate,
I think, for today.
So let's move on to one more
to get a sense of who all came
into the room with us today.
So here's the next question:
with what field or study,
so we know that not
everybody here is academic,
but what are you most familiar with?
What sort of knowledge
do you most identify with
in this category?
So we're seeing lots of Life Scientists,
that's great, I'm glad you're all here
to have this conversation with us.
Social Scientist, and
Humanities, and other.
That will be really interesting
to find out what other is later
and we'll be posting the results of this
after the conference is
over so you can all look.
So this first session,
this first panel is about the
stakes and the stakeholders.
So before we jump into
that let's get a sense
of what everyone in the
room sees as the stakes,
when we're talking about
governance of germine editing.
So in one to two words,
what are the stakes that
we're here to talk about
in your perspective?
So the major things here are
future, humanity, equity,
trust, power, many of the same things
that everyone answered of why
they came to the room today.
These are the things that are
at stake, is why you came.
Humanity.
All right, so let's go to the
next question if it's working.
So what issues in human
health and reproduction
need to be informed by the public?
So again, today we're here to talk about
the engagement aspect of governing this,
not as much about should
we or shouldn't we
but how do we make that decision
and how do we involve
the appropriate people?
So what issues do you see
as being needed to be
informed by the public?
Human welfare, everything,
access, all cures, who
decides, boundaries,
just give it a couple more seconds
to see what else comes in.
Patient voices, economics,
all, everything I think,
Lots of all's.
All the issues in human health
need to be informed by the public.
Access issues.
The IGI poll needs to be (laughing).
(audience laughing)
Uh huh, yeah.
Humanity, irreversible change.
Ah, what counts as a disease,
definition of disease.
Disability justice.
Understanding of human health
should be informed by the public.
Transparency, everything.
All right.
Eugenics should be informed by the public.
Getting rid of politics.
(audience laughing)
That's a big ask there (laughing).
Policy for applied research.
Autonomy, all right.
Great, so, let's go to the next one.
So that was, what should
be informed by the public.
So what issues in human
health and reproduction
should be reserved for experts to decide?
Bioinformatics, nothing, safety,
eugenics, science.
Science should be
reserved for the experts,
safety should be reserved for the experts.
Limits.
Safety.
What goes on in the test tube
is the domain of experts.
Technical risks.
Nothing, none.
Technical feasibility,
safety, and efficacy.
Public education should
be reserved for experts.
Collateral damage.
Scientific details, none.
How do we define experts?
(audience laughing)
Experts get to define experts (laughing).
Tech evolution, common values.
Methods.
Whether or not to have a
strawberry cream cheese
at lab meeting.
(audience laughing)
Mm hmm.
Boundaries, nothing, methods.
All right, so that's how
the poll everywhere works
and we'll do that at the
beginning of every session
to kind of get a sense of
where everybody is in the room
and we'll come back to this
at the end of the session.
(calm percussion music)
(calm music)
