Making the Cut | Session 4: Concluding Discussion || Radcliffe Institute

Making the Cut | Session 4: Concluding Discussion || Radcliffe Institute


– Welcome back, everyone. We have our last session today. And we are privileged to
have Sharon Begley moderate this last session
with our moderators. And I want to remind
everyone of the moderators that we’ve just
heard from today– Omar, Pilar, Charmaine. And Sharon Begley is a
senior science writer at STAT, which is a life science
publication of The Boston Globe, where she covers
genetics, neuroscience, oncology, and other basic
biochemical research along with science policy. She was previously the
science editor of Newsweek, and before that, the
science columnist at the Wall Street Journal. She has received numerous
awards for her journalism and is the author
of several books, including the New York Times
bestseller, Train Your Mind, Change Your Brain: How
a New Science Reveals Our Extraordinary Potential
to Transform Ourselves, and most recently, Can’t
Stop: An Investigation of Compulsions. And with that, please
greet Sharon, and let’s listen to the moderators. [APPLAUSE] – Thank you so much, Mac. And thank you to you and
all of the organizers for putting together
what’s been a terrific day. So we are batting
cleanup here, and our job is to try to wrap up what
we have heard earlier today, and also to give many
of you in the audience a chance to ask
questions that maybe you didn’t get a chance to
in the earlier sessions, or that just occurred to you
as the day has reached its end. So I’d like to
start off actually by building on
something that Mac said at the end of the last session. And I’m going to address this
question initially to Omar. Mac said, the
technical we can do. So this is going to be
a question about access, and whether there are
scientific advances that would make some
of the discussions we’ve been having about access– much of which has to do
with cost in this country, in low resource
countries, et cetera. So if you want to think
about that one second, I want to give one example
of the sort of thing where the technical
we can do might make a difference to access. We heard earlier
today an example of genetically
engineered T cells, white blood cells,
CAR Ts, that are used in some forms of leukemia. They cost roughly
$450,000 per treatment. One reason they cost
so much is the T cells have to be engineered
specifically for that patient. One idea for reducing the
cost and therefore the price at least somewhat– it remains
unclear how big a difference this would make– is to have a universal
CAR T. T cells that could be given to
any cancer patient without the fear of rejection. And if you did not have to,
again, draw out blood cells from the patient, send them to
a central processing facility, do the genetic engineering,
send it back, et cetera, then maybe it would
cost only $200,000. Anyway. So my question to you Omar, is
the advances in genome editing technologies have been
just breathtaking– a word I use literally,
because it seems I just get to my office
every day, [GASPS],, and I’m going like this
because there’s another thing I have to write about. So I wonder if you could just
look into your crystal ball and tell us if there
are any things that are within the realm of
technological possibility that might make a difference
to access, cost, et cetera. – Yeah. So I definitely agree with
Mac that the technical is definitely we can do. So I think through
technical innovations, we can probably make access
not necessarily an issue. And I think one of the
biggest problems of access is going to be cost. So as you’ve seen with the
most recent gene therapies that have been approved, the
first one was $1 million for blindness. The second one, which addresses
I think SMA was $2 million. And a lot of those costs
have to do actually with how you deliver the
reagents to cells in the body. And so it comes down to the
viruses or other vectors that you use which can be really
expensive to produce and make. And so advances in how
we can make cheaper– either viruses, nanoparticles,
other modalities that can package these things,
I think will have a big impact. And so Vance actually talked
about this in our panel, where the NIH has just announced
this partnership with the Gates Foundation to try
to really fund– I think it was $200 million
for cheaper viral vectors. And their goal really is
for the developing world, because there’s definitely
no way a $2 million therapy will work there. But I think those innovations
from that funding initiative can also apply for the developed
world, where we can really drive down the cost and avoid
problems where insurance companies won’t pay for them,
or other problems that actually plague our country
when it comes to why we can’t get certain treatments. And then also beyond that,
for cell engineering, it’s not really
delivery problems. You mentioned allogeneic T
cells, or universal T cells. And I think that’s
much more within reach, because our gene editing
capabilities where we can make many edits in a
cell exist today, and there’s actually
companies like Allogene, and Beam Therapeutics, and many
more on the West Coast that are actually trying to make
these T cells that anyone can be injected with without
having a bad reaction. And if that is
actually realized, then I think that’ll
really drive down the cost of cell
therapies as well. – That’s great. It’s good to start
on a high note. – Can I respond to
that a little bit too? Because I love that you
raised CAR T, because there’s an additional issue with CAR
T and access, which is that– so best of my
knowledge, it’s still under what’s called
a REMS, which is a regulatory requirement
for a drug that is approved for marketing, but
there are limitations on how it can be marketed. And in particular, there are
limitations on the CAR T cells with regard to who
can administer them. And this is because
of the possibility that when somebody
gets the therapy, they would have
a cytokine storm. And so that’s this
massive immune reaction that can kill you. And so the FDA put restrictions
on who can administer it so that it is only administered
in places where they have the capability to respond– to identify that a
cytokine storm is starting and to respond to it because
you can respond to it, so the person can
get the therapy and not die from
an immune reaction. But it takes a fairly
technologically-advanced health care infrastructure to do that. And so that’s another
limitation on access. Probably something that
could eventually be addressed technologically, but
I think at this point, there are actually–
it’s more than the cost that is limiting access. It’s actually safety issues that
are limiting access as well. – And as Omar and Pilar
just alluded to, Charmaine, there are questions not just
of what the thing costs, but what the infrastructure
meant to deliver it to the patient costs
and how available that is across the world. So both from your panel and
from your own scholarship, especially in
global health, where do you see the
leverage points where we might make some of
the things that we’ve been hearing about
available to as many people as one can imagine? – Before I even go to global,
let’s just talk about the US. So Vance talked about
sickle cell disease, and showed the interest of
many people with sickle cell disease, and family members
and relatives of people with sickle cell disease, their
interest in genome editing, gene editing. But there’s a slogan that
circulates in the sickle cell disease community, or in
the community of people living with sickle cell
disease and their families. And that is care
today, cure tomorrow. And for many people with
sickle cell disease, the care that they’re
getting today is so limited. And Vance talked about the
different models of care, and how we think about cost. And for many people, it’s,
help us live better lives today in terms of our access
to the treatments that are available today. And the limitations in terms
of where they can get care, and who has access. The disparities in terms of
care for people with sickle cell disease are just phenomenal,
beyond the health disparities in the US in general. And so thinking–
economists and others– I’m on a National
Academies committee now that’s looking at
sickle cell disease. It’s the first NAS committee
looking at sickle cell disease, developing a blueprint
for sickle cell disease. And the issue of cost
just keeps coming up, and economists, and how we–
and we’ve talked to people from pharmaceutical
companies, and they’re also looking at how to think about
cost, recognizing that they also have a role to play. So I think thinking of the
physicians and their roles with this, but also the
pharmaceutical companies and biotech, and how
they provide therapeutics and treatments to patients. So it has to be a
multi-level approach in how we think about cost
and addressing cost for care, and of course,
when we start thinking about curative therapies. Globally, the issues are– – Daunting. – [CHUCKLES] Yes. – It also seems like
we ought to be thinking about not just partnering
with the Gates Foundation, but partnering with people for
global delivery of these kinds of things, like Doctors
Without Borders. They have tremendous expertise
in delivering therapies that require things like
refrigeration, building roads so that you can
get the therapies to the people who need them in
places that don’t have roads. There’s a whole infrastructure
in other countries that you really have
to start at the ground up with infrastructure. And there are people who
have some expertise in that. – Well, not to
get too technical, but the NIH-Gates collaboration
seems to recognize these resource and
infrastructure issues, and has stated on Wednesday
when this was announced that their goal was an in vivo
therapy for sickle cell and HIV, meaning you put it
directly into the patient, as opposed to ex vivo, which
requires taking cells out of the patient, doing
stuff to those cells, and then putting them back,
which is kind of like a bone marrow transplant,
which requires all sorts of monitoring, and the
equivalent of an ICU, et cetera, which are not
available in, obviously, many low resource countries. So at least if this
works out, they’re trying to leap over some
of the existing barriers and just do the
proverbial one-and-done. They do use the
analogy of a vaccine. Since we’re all
quoting Vance up here, Vance said during his
panel that the public needs to be part of the process
and part of the conversation. And when Matt was talking about
his super duper commission– presumably which would, if
it’s anything like the existing international commission
on human genome editing, especially germline editing– would solicit input
from the public. So at the 2015
first International Summit on Human
Germline Editing, which was in Washington,
DC, there was not a great deal of representation
of patient communities. The second International
Genome Editing Summit, the infamous one in Hong Kong,
tried to remedy that somewhat. So I’m wondering from– especially Pilar and
Charmaine, but please feel free to jump in, Omar– if you see– looking at– I hesitate to call
it the mistakes, but let’s say that the failure
to be as good as possible of existing
commissions and bodies so far, if you see any
way forward to truly bring in as many voices as
possible into discussions of and even decisions
about something that has the potential to
affect much of humankind. How can we hear the public? – That’s a good question. [CHUCKLES] I think,
again, Vance is doing a good job of engaging
people living with the disease. And there are advocacy groups
related to certain disease. But there are also friends
of those advocacy groups. There are people who are
affiliated with those groups. And I think one way– a great way is to
start with people who have diseases that we’re
thinking about addressing, and starting with
those communities, and building it out from there. But there also needs to be– we think of projects like the
PMI, the Precision Medicine Initiative, and all
of that programming. That’s trying to get a
million people in the US, at least, probably more. That is doing a lot– that
program alone is doing a lot to engage people across the
US in thinking about health and thinking about– and I’d like to believe
that they’re getting people to think about health
in all its complexity beyond just the
genome, and thinking about the genetic,
and the environmental, and the behavioral aspects. I think some of the mechanisms
that are being used, and a lot of the funding that’s
gone into engaging communities around the Precision Medicine
Initiative, and all of us, could be leveraged to
start talking about some of these technologies
as well, both in terms of the promise of these
technologies, the limitations, the risks– all of it. – So I guess I would just
add that, first of all, there’s not going to be
one way or one thing. I don’t necessarily see it as
a failure of past commissions that they didn’t
include a lot of voices from disability community. I mean, there were a
lot of committees– including a lot of
scientists– who were not necessarily included. And so part of
what you need to do is to do a lot of different
kinds of community engagement with a lot of
different communities. There’s not a single public. There are many publics. There are many different
kinds of interests. There are people with different
levels of intrinsic motivation to participate in
these activities. We also know– in the
United States, for instance, we do not have a great history
of doing public engagement activities. And almost every–
the UK, Canada, various European countries have
pioneered methods of whether it’s community juries, or– they have all kinds of
more developed methods of doing community engagements. But almost all of them– all of them can be criticized
and have been criticized. And I’ve seen reports from
governments and from health agencies and things like that,
where community members feel like they are not adequately
heard even though it was a whole day of engagement. Or they felt not well
empowered because they felt like they still didn’t
understand the technology very well. These things are
not easy to do well, and I think it’s going to
be an iterative process, and on a long-term ongoing set
of processes around the world in order to do it well,
because there’s still a lot we don’t know about how
to do good community engagement with a variety of communities. – So the reason I
asked that question is that public discussion,
community engagement is usually raised in
the context of one day reaching a societal
consensus about, in particular, germline editing. There is less debate– as I
think we’ve seen even today– about somatic cell editing for– what do we call them now? Born people? Do we have to say born
in front of those of us who are walking around? Anyway, not embryos,
not eggs and sperm. So I’m reminded of the
old joke about democracy. Democracy cannot be two wolves
and a sheep sitting around deciding what to
have for dinner. [LAUGHTER] So I think as was clear from
the last panel, or just talk with your friends, we
are unlikely to reach 100% agreement on what
is allowed to be done. Forget what should be done. Let’s not be normative. Just what is allowed to be done. So if you all agree that
universal consensus, 100% agreement is unlikely, I
wonder if you would describe for us what you think this
nirvana called societal consensus might look like
in order for countries– either individually
or globally somehow– to decide what to do about
allowing germline editing. Anyone. – Please. [CHUCKLING] – I don’t know. Matthew talked about
this ginormous– [CHUCKLING] – His committee’s getting
bigger by the minute. – I know. Yeah, and I’ve had
concerns about the WHO– glad that they’ve done
it, but you’re invariably going to have limitations. The National Academies
committee, from what I recall– and Matthew, when
you talked about it, you said people are on the
committee from every continent except Antarctica. But I didn’t see anybody
there from China. – There were. – Yes, there were. – There were? – Yeah. – OK. There’s one. OK, all right. Glad to know that. But there will be limitations
invariably, because if it’s going to be one person– – No one from South America. – Yeah, it was South America. – OK. All right. That’s– OK. Definitely. Because when I
looked at him, like, every continent is
not represented here. South America is not. But as Pilar said, certainly
not criticizing those committees that have been formed. But it will take
some serious thought to figure out what’s ideal. Because we can’t have people
from everywhere and still have productive
conversations about this. But certainly, having
broader representation– the issue of consensus,
though, is the issue. Is it consensus that
we’re looking for? Is it something else? I think– – I don’t think it’s consensus. I don’t even think that we
should be using that word. So I think there are
a couple of things. One is that it’s going to
be political processes. And it’s going to be political
processes both within nations and in an international sphere. I think– so it’s not just
the US National Academy, that first whatever 2015
gene editing panel– I think was 2014. I don’t even remember and
I was on this committee. But so that was the Chinese
National Academy, the Royal Society, the US
National Academies, maybe one other national
academy came together. And since then, there’s
actually like an academy of the national academies
across the world that has been working to catalyze
these conversations. So those kinds of
fora, the WHO– I think there’s going to be
an organic process in which policymakers begin to converge
on some high-level principles. And that organic
process is going to involve both expert
committees and a lot of engagements with the public. Now, what you’re going to get
is some high-level principles articulated by somebody,
and then nation states will adopt them as
they see fit through their political processes. And we’re going to have
to live with the fact that everybody doesn’t
agree on everything, and everybody doesn’t
have the same inclination to enforce national
laws in this regard. And I don’t think you
can do better than that. It’s a political process. It’s going to be messy. And it’s not going
to be a consensus. – It’s not. – And I guess just– I completely agree with
the political process part, and I think just to take an
analogy of something that’s similar for how two cultures
that can be quite similar can end up in
different buckets, I think with mitochondrial
transfer therapy. That was pioneered in the US. It’s the procedure where you
can cure mitochondrial diseases by transferring
mitochondria from a non– I guess genetic mother to an
in vitro fertilized embryo, and you end up with two
genetic mothers and a father, and it was banned in the US,
but it’s approved in the UK. And so even for two cultures
that are so similar, you can still end up with
very different perspectives. And it’ll be
interesting, I guess, to see how principles
that are agreed upon can be distilled differently. – I want to open it up
to audience questions in just a couple of minutes. So let’s see. Is the microphone
still there, or– – It can come back. – OK, it can come back. So yeah, if people
want to ask a question, and we’ll deputize
the moderators of the previous panels to talk
for everybody on their panels. [CHUCKLING] But we do have a scientist. We have several ethics. We have law. We have all sorts of
things represented up here. I want to throw
out one thing again in the guise of international
guidelines, et cetera. So a point made in one
of the morning panels was that there are such
severe reputational risks to scientists who would dare to
do this thing that [INAUDIBLE] did. That that alone would be– at least so far– a
strong break on anything like this ever happening again. So I would just throw out
to you that in the couple days after Dr. Hu made his
announcement in Hong Kong last November, he received an
email from a fertility clinic in a country in the
Middle East saying, wow, that was a really
interesting thing you did. Can you please send one
of your graduate students here and teach us how to do it? So the idea of universal
condemnation I think is exaggerated. What you heard about–
certainly in the press– was the condemnation, but
universal is going too far. And similarly, a doctor who runs
a fertility clinic in New York, and who did a mitochondrial
therapy but in Mexico– because, again, illegal– he
is absolutely vocal, including in a recent CRISPR
documentary, that this is what parents and
would-be parents want. And against the power
of the marketplace, or what we might call
consumer demand– So consumer demand,
parents over here, versus guidelines,
consensus, whatever we want to call it over here. He thinks this is going to win. So for whatever that’s worth. – I totally– I think you hit on something
really important, which is that there is a community
of research scientists– and academies tend to have
the research scientists. And the Chinese National
Academy is made up of Chinese scientists who
often got their training in the US or Europe, or at
least some portion of it at this point, and they want
to collaborate with people internationally. And reputation among the
more regulated scientists matters to those people. But there is a whole
other group here– whether it’s in China, or
the US, or anywhere else– that is the reproductive
medicine people. And they do not have the same
set of incentives at all. And when I worry about
what’s going to happen and who’s going to do
something completely boneheaded with CRISPR, it’s
those people that I worry about, because we already
see things like illegal stem cell clinics all over
the United States, in many states in the United
States, just flourishing. – And we see how well the FDA
has been regulating those. – Exactly, and the
FDA shuts them down when they find out
about it or they do something horrible to
somebody like blind them. But the FDA doesn’t have the
personnel to find those people and shut them all down. And that’s the United States. Think about all the
other countries. So I do think that there are two
very different cultural milieu here. There’s the one of the
research scientists, and then there’s this one of
the reproductive medicine world. And they operate with very
different incentive structures. – Right. The wild west of
assisted reproduction. Let me ask about– again, since we’re talking
about deliberative bodies and the guidelines
that they offer, Hu maintains that he
followed the guidelines in the 2017 academy report. Yes. Reasonable minds
disagree, but he seemed sincere in asserting
that he believed it. Is he backfilling
after what happened? Possibly. But people who know
him fairly well think that he’s
sincere in saying that. So we don’t need to
litigate the report, but I’m just wondering
if, again, there is a societal concern about– Miss Kiran was explaining to us,
the experiment did not go well. The genes that he intended
to edit, he didn’t. He got mosaicism. It was just a mess. So if that sort of
thing can happen when studies, experiments
are carried out, I think we can
say, prematurely– so how do you think this
might play out, again, if somebody thinks that they are
adhering to what society wants? Maybe just extend
what you were saying, Pilar, about, again,
reputational incentives, or lack thereof, and
also consumer demand. Are we going to
see more of this? – I mean, I think you
already see some of this. There’s the whole
bio hacker community, which I think is this
third world that we’re talking about of people who
think we already know enough, and we can start to act on it. People who package CRISPR
reagents in their garage and send them out to
people, encouraging them to use them, or
even inject themselves. And I think there’s– I think her name’s Liz Parrish. She’s been injecting
telomerase in herself and doing experiments on
herself in South America to try to extend the aging. And so I think the bad– there’s many instances of people
already trying to take this into their own hands. But I think you’re right. Expertise is a big
component of this, because if you were doing it
through the proper channels, you’d have people who advise
you on whether this is correct or not, and actually
get feedback. And it seems like a lot of
what Hu did was in isolation and not getting the proper
feedback on his experiments. – You know, I think going back– – So– – Sorry. Are you done, Omar? Going back to what
someone was saying– I can’t remember who
said it this morning– is that many scientists are
just busy doing their work. And for some of
them, they don’t even know what they don’t
know in terms of ethics. There are some bad
actors out there who are just going to
go rogue no matter what. But I’ll share an
example of how I think we can change this
in terms of how scientists approach their work. So soon after these
CRISPR babies– the announcement of all
of that– students at Duke in genetics and genomics, they
got interested in these issues. And they encouraged their
advisors and directors of the program to
have a town hall about the ethical
implications of this work, of genome editing. At about the same time– this happened in the spring– just before that
happened, I was invited by students at
University of Chicago in their genetics department
to come and talk about my work on race and genetics. And after the conversation,
after the talk, we had a discussion about– well, they initiated the
discussion about needing to understand– at that time,
we were talking about race– needing to understand how they
think about race and ancestry as they do their genetic work. And it blossomed into
this bigger conversation about their desire to learn
more about the ethical, legal, and social implications
of their work as they get their training
as human genetics scientists. And I was just mesmerized
by that conversation, and realized that
these students are hungry for this information. They realize that the
responsible conduct in research thing that
they get is inadequate. They do that check
off, and they– we want more than that. And so we had lots
of conversation. And I have initiated
conversation with the American side
of human genetics, because those students share my
personal view that all people trained in genetics– and other sciences, but
genetics is my science– need to also be trained on the
ethical and social implications of their science, along with
learning about everything they’re learning in the lab. And one of the things we’re
preparing to do at some point is to get a sense of how
geneticists are being trained. Because we don’t have
a sense of whether they’re getting this information
as part of their training. It’s not going to be
the be all and end all of getting rid of
people doing crazy things, but I think it
could help, and help students to think more
critically about what they’re doing, and not just of
what it means in the lab, but its meanings and
implications beyond that. – I’m not sure if I’m
more encouraged that they want that or discouraged
that it doesn’t exist in– – Yeah, I am discouraged
that it doesn’t have– – Glass half full. – I try to be optimistic. And the extent that the students
are asking for it is like, wow. – So I actually wanted to add
two things about your question, because I had heard the
same thing about Hu that– from people whose
opinions I respect that he believed that he
was following guidelines. So two things about that. One is Matt put
it in his set of– his proposal. You can’t do this
stuff in secret. There have to be
other eyes on it. And if there had been
other eyes really on what he and his
collaborators there in the assisted reproduction
clinic were doing, probably, they would
have known that he wasn’t following guidelines. And so I think that’s one
thing that’s really important. But the other thing
is, China doesn’t yet have a long history of oversight
of human subjects research. The United States has
taken a long, long time to develop an oversight process. There are a lot of things wrong
with our oversight process. There is a lot of compliance
mentality among scientists. It is not perfect,
but it’s a lot better than it was 20 or 30 years ago. And so part of it is,
it just takes time, and China is developing its
capabilities really fast. – Any audience questions? Since you’re right
there, go ahead. – OK. Before– oh. My name’s [INAUDIBLE] Samuel. I think I’ve– yeah,
I’ve been up here before. [CHUCKLING] But before I start, I just want
to say that these words aren’t mine, but someone who have
thought of this comment that I’m about to say to you. And basically, this is just
me rephrasing their words. When you’re talking
about boneheaded people using CRISPR to wreak havoc– which is quite a
possibility now that we’re getting closer and closer
to true human gene editing– I think that it’s important
to emphasize that preventing government control over
these designer babies, and the process of doing that. The reason why I think this
is because it’s extremely easy for people like
Hitler to rise to power, and giving that
kind of opportunity to the government at all is
extremely dangerous for all of mankind as a whole. One madman or a scientist
can only do so as much, but a government with hundreds
of legislators and executives with the income of all the
people in an entire state could destroy an entire
civilization and murder millions of people. We should focus on
giving this power to the people and every
individual person as opposed to a few people
who have the power to subdue an entire population. I just wanted to know the
comment and your thoughts on this. – So I guess I would say– I’m not sure what the
person means by giving the power to the people. – Basically, the person– – Are they saying we
should just not regulate or have any oversight of
human subjects research that involves gene editing? – No, this person thinks
that the government could use the concept of CRISPR
to cause a lot of damage to our society in general,
because governments have a lot of power
to do a lot of things. – So it’s true
that– and frankly, a malignant government can do– they can engage in genocide. They don’t need CRISPR to do it. And they’ve done it without
CRISPR all over the place. So I think the only people who
can actually regulate things are governments. Now, that doesn’t
mean it has to always be the national government. And we can think very
carefully about how regulation is designed. So the way our human
subjects regulation happens in this
country is that there are regulations that are passed
by the federal government. There can also be regulations
and laws that the states pass. And then there are
essentially local boards called institutional
review boards that all over the country
implement those regulations. And usually, they
have the final say. And there is a lot
wrong with this. There are a lot of
things that are at least imperfect about this approach. But one of the things it
does is it intentionally decentralizes the oversight
of human subjects research. We’re centralizing
it up a little bit. But because it is
decentralized, I think there’s– and the other thing about it
is that the regulations don’t tell you what you have to do. They’re more general. They say, well, you have
to weigh the benefits against the risks,
and the benefits have to outweigh the risks. So they don’t tell people,
you have to edit this way, or you have to do
this experiment. And I don’t think– when people talk
about oversight, we’re not talking about, you
have to do this experiment. Maybe, right? That’s a different kind of law. So I think we do need
oversight, would be my view. We need oversight
of any research that is going to involve human beings
to make sure that it’s not just a researcher by
themselves deciding what it’s OK to do to other people. At the same time, I think what
this question does bring up is, are there things
that we should outlaw? So when we talk
about, are there lines about using CRISPR to change
future generations that we just shouldn’t cross? If we think there are
those ethical lines, do we think those
lines should ever be instantiated in the law? And somebody might think
it might be really morally wrong to do certain things, but
also believe that we shouldn’t pass a law about that. – Well, a lot of
scientists are working towards humans that are more
healthier, and not perfect. And that’s the goal of
CRISPR, I’m assuming. But the society that we live
in now is very capitalist, and people with money and wealth
could monopolize on the fact that designer babies
could possibly be a thing. And there could be a
foreseeable reality in which people with
money and wealth have access to designer babies. – Let’s leave that as a
comment, which is, I think, very provocative. I just want to get to some
of the questions behind you, but thank you very
much for that. – Thank you. – Hi. My name is Mikey, I’m a student. And I’ve been taught about
CRISPR in the classroom, but this is the first
time I’m really learning about the bioethics of it. So do you think that we need
to get a better understanding of the bioethics before
we’re educating generations about this technology? – Absolutely. Not before, but while. Right? While we’re talking about the
technology, not just CRISPR, everything we do in science. It all has implications
for society, for individuals, for
families, for communities. And we have to do them together
so that people understand, and so that we
minimize– like I said, we’re not going to
completely eliminate people doing crazy things. But we can minimize that. So that’s my– – Thank you for
making that point. – Thank you. – Yes. – Hi, I’m Orlena O’Brien. I’m a Radcliffe and
Harvard Law School alum. Thank you very much for the
breadth of this conference. Given Radcliffe’s history
in gender studies, I’d be very interested in
hearing just a little bit about some of the gender issues
you’ve confronted with respect to genetics and CRISPR
more particularly, and what is being done to
encourage young women to go into the field of CRISPR? Thanks. – I think it’s more a science
question, I hate to tell you, Omar. – Yeah. I think that goes to the problem
of the representation in STEM and how we can improve that. I think for– I went through, I
guess, my PhD at MIT. And I think it’s true,
in the lab I was in, it was probably maybe
20% female and 80% male. And I don’t think that’s
obviously on purpose. But I think a lot can
be done to improve that. And I know at MIT
and the Broad, there are a lot of programs that try
to bring in women at younger ages to do a week or two-week
courses, summer courses. I’ve mentored students
through these programs. And I think that helps
to get women engaged more in the sciences, and get
excited about the sciences from a younger age, before
they may be crowded out. And I think that’s
the experience been in my environment. I don’t know if you guys have– – Well, let me just
throw out that, given the importance of role
models in CRISPR, we have– as we heard this morning
in the timeline– Jennifer Doudna and Emmanuelle
Charpentier arguably initiated the use of CRISPR
as a human genome editing, or as a genome editing tool. So one hopes that the
young people coming up through high school, college,
et cetera, choosing a career recognize that. So many of the leaders
in this particular field happen to be and
have been women. So there’s that. – And I guess
building off of that, I think an important part of
that is also recognizing women through the awards
process, which I think there are
a lot of awards right now that don’t
necessarily do that. I think there’s something
to improve there as well. – Right. – I think there are
some other things. For instance, Francis
Collins has recently announced that he’s not
going to go speak on panels and go to conferences
if there isn’t a good representation
of women on the panels at those conferences. Other senior scientists
can do similar things. There are also people
like Jo Handelsman, who is at my institution right now. While she was at
Yale, she did a study where she sent out CVs of female
and male graduate students and postdocs for
job applications. And they were
exactly the same CV, except a woman’s
name or a man’s name. And she found out that the women
were being offered less money by a pretty substantial amount,
at this $30,000 to $50,000 range. They were being offered
like $6,000 to $10,000 less, for instance. They were being
offered the job less. So doing those kinds of studies
and holding the mirror up to our scientific
community so that people can see what is going on
is also really valuable. And there are more and more
people doing that kind of thing with regard to both race
and gender in the sciences. – Right. I was going to mention
the intersectionality, because there’s one
thing with women, but being women from
other marginalized groups are even more compromised in
terms of access to things. – So there are a couple
of clubs around here for women to encourage
them to go around in math, because I just got invited to
speak at one yesterday called Girls’ Angle, and
it’s done at Google. And these kids are definitely
high school or below. And the girls in math are
incredible, what they’re doing. They left me far behind. But they want
female role models. I will also say, in industry–
having been in both academic and industry– the major thing
for stopping people I think in academic conferences
is you allow your speakers to speak over time. And therefore, you
don’t get the question. While in most
industrial conferences, we shut them up and then
the questions happen. – And on that note, we are done. [LAUGHTER] [APPLAUSE] – Oh, wow. – So I’d like to thank
the last session, Sharon. That was terrific. Charmaine, Pilar, Omar. I’d like to give just a
very few concluding remarks. And just from listening
all day, I sort of jotted down a few things. And in addition to
thanking the panelists, I want to thank
all the speakers. I want to thank everyone who
attended in person and online. I hear my friends and family
in Italy are watching. Thank you. We know these things. We know who’s watching. So I want to thank
you all for joining us in this discussion
on gene editing. Discussions that folks
prior to Tuskegee never had, for instance. It has been invaluable to hear
the variety of perspectives we have heard today. The discussion has
raised more questions, and there are no easy answers. In particular, it makes
clear an imbalance of power in our world in terms of
access to health care. Even what diseases we need
to research– for example, sickle cell anemia, which
we know disproportionately affects people of color. It also raises
important questions about reproductive freedoms. Is it freedom to eliminate
undesirable diseases or traits? Is it ethical? Does freedom to
choose necessarily involve making an
ethical choice? This must be counterbalanced
with the reality of human suffering. Should we do everything
possible to eliminate suffering? The answer is most likely
a synthesis or a balance between these ideas. And with that I say,
what Rosemary said was better lives and
all of us to flourish. So one more announcement
before you– I know I’m separating
you from the wine. Please go to the poster
session back at Fay House. And we have additional lectures
in the gene editing series that I’d like all of you
to attend if you can, which December 13,
we have making pig to human transplantation a
clinical reality with CRISPR and genome editing. December 13 at 4:00 PM. You’re not going
to remember that, because I wouldn’t
remember it, but go online and you’ll get the
date and the time. But it’s in December. In February, we have our
friend David Altshuler coming from Vertex, who will
be talking about humanizing drug discovery. And then one in April in the
spring, “The Challenge Ahead: Bioethics and the
Consequences of Gene Editing.” And I would like to also
put a plug in for an art exhibit in a week or so, on
November 4, The Once and Future Heart. The exhibiting artist
is Dario Robleto. And Doris Taylor will be the
director of the Regenerative Medicine Research and
director of Cell and Organ Biotechnology from Texas who
will lead the discussion. And it’ll be moderated
by Jennifer Roberts, one of our colleagues in the
arts, one of the co-directors for the arts. And do I have
anything else to say? Because I’m hoarse, people. [CHUCKLES] I think I’m
just honored, really, to have you all
accept the invitation. Couldn’t have done this
anywhere else but Radcliffe. It is a true privilege and
honor to be standing here and put this program together. And I have to thank all the
other colleagues, my science friends. Of course, utmost
support from the dean. She’s been terrific. And of course, Becky. Nothing could really
logistically can happen or me phonetically
saying your names without Becky
sending me the notes. So with that, have
a pleasant evening. [MUSIC PLAYING] [APPLAUSE]