-: Good afternoon, everyone.
If I may, let's take our seats so we can
get Dr. King's show on the road so to speak.
This is, it turns out our first
in this grand round session, turns out
to be our Daniel W Foster, M.D. visiting lectureship
honorary lecture to remember our esteemed colleague
and the good friends of our friends, the Hagees,
who have made this possible.
And thank you Jan, thank you Fred, for this.
(audience applauding)
It's an honor to introduce Nancy King.
Professor King has the privilege
of the long view of the development of bioethics.
She's an uncommon person in how she got into bioethics.
She was, after finishing college, she was considering
what field to go into because she was so excited
by an encounter with one of our prior
Foster lecturers, Leon Cass, who was one of our,
I think our second speaker.
And in working with Professor Cass,
she knew that somehow she wanted
to do this bioethics thing.
And so she tried to figure out
what would be the right discipline for her.
It ended up being law, getting a law degree
from University of North Carolina School of Law,
entering there after a short stint working
for HCFA, learning about how the sausage is made
in terms of healthcare, financing
at the government federal level, that she got her fill
of that sausage fairly quickly.
She went on to have a long stint
at University of North Carolina, rose to the level
of full professor.
And then because of some very interesting opportunities
and new collaborations at Wake Forest University,
she joined their faculty back in 2007
where she currently is, holds a Professor,
Department of Social Sciences and Health Policy.
She's the Co-Director of the Wake Forest Center
for Bioethics Health and Society,
and also of their graduate program in bioethics.
She has over 150 publications including about 10 or so books
one of which is kind of a standard in the field,
a couple of editions of the Social Medicine Reader.
And she's worked in many, many areas of bioethics,
informed consent, ethics at the beginning
as well as the end of life care, research ethics,
ethics in emerging technologies, in gene transfer,
in bio banking and regenerative medicine,
and those latter two are gonna be mostly her topic
for us today.
Please welcome Professor King.
(audience applauding)
-: Thank you so much, Dr. Sadler.
I'm really delighted to be here.
This is a wonderful audience of people
who are interested in ethics because you're here
because you wanna be here.
And that's absolutely terrific.
And I'm just really honored to be able
to take part in the Dan Foster Lectureship
and I also wanna thank Mr. and Mrs. Hagee
for their support and everybody
who has already been so gracious
and welcoming to me here, Dr. Sadler,
Dr. Pedolski, all of his colleagues, all of the people
who support bioethics here.
And I'm actually really humbled
to be on the list of folks who have given this lectureship
who, many of whom are teachers and mentors of mine.
But the best thing is to be able
to talk with you all today.
So obviously I have a provocative title
but this is a provocative topic that's
of interest to everybody, and it's been going on
for some time, but there's always something new.
So here's my overview of the talk.
What I mean to show here is that we have
this profound belief that science is going
to clearly, cleanly and finally
to the right answer, the rocket ship
that's gonna hit in just the right place.
But science, like everything else
that's a human endeavor is more like
a very complicated Rube Goldberg machine
with a lot of working parts.
And in order to fully and realistically understand
what it is that science can offer,
whoops, sorry about that.
It's really important to step back
and look at how we have been thinking
about gene editing, especially germ line gene editing
because science doesn't work
as quickly or as simply as we would like to believe.
So, this headline from an article over three years ago now
is jut perfect.
They're going to CRISPR people.
What could possibly go wrong?
Well, if you think about the history
of how we got to CRISPR, you have to go back
a little ways and look at of course
the Human Genome Project, the discovery of DNA
and the beginning of identifying genes,
and go back to what was then called gene therapy,
which I and a number of colleagues have tried
to partially successfully to rename gene transfer.
The first gene transfer research experiment was in 1990.
Gene transfer, which now because there's gene editing,
should probably be called gene addition,
is only just now really beginning to bear fruit.
So it takes a while.
And when you talk about gene editing,
there are things to worry about.
There are principled and practical questions,
and some of the practical ones are the likelihood
of mosaicism, the likelihood of mosaicism
in incomplete correction, the likelihood
of off-target mutations that could be harmless or harmful.
There's the question of monitoring
and whether you're a research subject for life.
I'm also gonna talk about assisted reproductive
technologies and their role in gene editing
and my cosmic question for the day is
what I've labeled the unavoidable policy problem.
If our goal is to promote health and well being,
where do our efforts belong and what does that have
to do with what we owe each other
and why we owe each other help
with health and well being.
So the first thing that's important to note is
that health and well being aren't all about genes.
There's a lot of other stuff going on.
Everybody here recognizes that.
But there, epigenetics is becoming really big now.
There are lots of environmental factors.
There's, you know the old question nature versus nurture,
well it's both.
Lots of factors that are imperfectly understood
also feed into health and illness.
But we're still in the era of Genes R Us.
And my favorite example, my favorite current example
of that is the fact that this article is called
"Genetic Analysis of Social-Class Mobility".
Now who would think that there would be a genetic cause
of the ability to get more education than your parents
and to make more money than your parents,
which is how they define social-class mobility
in the article.
Well the punch line of the article is
well, genetics have almost, have virtually nothing
to do with social-class mobility.
But by framing the question this way,
they got grant money to do the research
and they got a prominent publication.
So we're still in the era of Genes R Us
even if the answer is genes aren't really all us.
The next thing is to talk about a relatively
uncontroversial but still underdeveloped area
and that is somatic cell genome editing.
When we first started talking about gene editing,
it was somatic cell gene editing.
In fact, I was a member of the Recombinant DNA
Advisory Committee in like the late 1990s, early 2000s
and at the time, some of what we reviewed
were studies using zinc finger nucleases.
And I didn't understand at the time
that that was gene editing.
I figured that out when CRISPR became news
and people started talking about ZFNs and TALENs
that had been around for a while.
And I thought oh, that's what I was looking at,
ethical issues in recombinant DNA, relating
to some of those techniques.
They've been around for a long time,
but they're very difficult, they're very challenging
and CRISPR is much, much easier to do.
So kind of everybody can do it.
And you can see the illustration that sort of is
the meme for CRISPR which is that it's
just like a scissors.
It's just like copy editing.
You snip something out and maybe you stick something
in instead, or you just snip it out
and let everything come back together.
And then people began to realize well, somatic cell
genome editing can't quite do anything,
any more than gene addition can.
Specific targeted edits can work very well.
The real question is, when you actually snip something out
do you really know everything that you're losing
by doing that.
Every genetic variant has a lot of different things
that it does, and it's possible that we don't know yet
that when we're snipping something deleterious out,
we're not snipping out something useful.
And there are diseases with systemic effects
that can't necessarily be well addressed
by somatic cell editing.
But there's a great deal of it going on,
and there are some trials in the US.
There's a trial that's been running
for a couple years now for Hunter's Syndrome.
That uses ZFNs.
There's a trial that is just started
for sickle cell disease using CRISPR.
And there are questions of accuracy and precision.
There are new techniques being developed all the time
like RNA editing and especially base editing,
maybe even more versatile, accurate and precise
but there are still lots of questions.
But if you need to hit every single cell,
it's very hard to do that in a child or an adult.
And so therefore, people started talking
about doing editing earlier.
Embryos, zygotes, even gametes.
So this started with non-viable human embryos being edited
in a Chinese lab in 2015.
There was a lot of mosaicism and a lot
of off-target mutations.
Then Oregon Health Sciences University was the first
to do this work several summers ago.
The success of that work is still a little controversial.
Now gamete editing is being talked about again.
I heard an NPR story recently about editing sperm
and the thing that I found interesting
was that the reporter was extremely enthusiastic
about the potential for this.
But he also said, well you know we don't know
if they'll ever get it to work properly.
And the DNA is packed so tightly into a sperm cell
that in order to loosen it up enough
to get CRISPR to go in, you have
to zap it with electricity.
And I wondered, okay so what does that do?
So there's lots of issues involved in starting early,
and long-term followup is absolutely needed
and that raised a lot of early questions
about, well long-term followup for how long?
The entire lifetime of an embryo
that's been brought to term?
The offspring of those embryos because when you start
this early, you absolutely hit germ cells,
and that's what makes these inheritable.
And then the question came up, okay, how do you
actually do this?
If you were going to do this, how does it work?
Well, you have to create an embryo in the lab.
So you have to use in vitro fertilization.
Then to check for the mutation that you want
to experiment on, you have to do
pre-implantation genetic diagnosis.
Then you have to do your gene editing.
Then you have to allow a little more cell division
and do pre-implantation genetic diagnosis again.
Well, and if you're doing this clinically,
then you have to bring the, you have
to implant the embryo and bring it to term.
So, when people started talking about how important
genome editing was for eliminating genetic diseases
from the population, the first thing
that I thought of, and I'm really surprised
that this isn't being talked about more widely is,
IVF and PGD already do that if you select a healthy embryo
rather than correct an embryo with a deleterious mutation.
You are already on the way to eliminating
genetic disorders from the, in future generations.
There are actually very few instances
where that won't be effective.
It depends on the nature of the disorder
and the couple that are contributing the gametes.
So if you think about what the ideal result
of gene editing is, you want something that's targeted,
accurate, precise and the inheritable changes
might be either a happy accident or your actual goal.
So, I think actually if that's the goal,
it raises a question about other ways
of achieving that goal.
So is this something that we really need
or it something that we want because it's
such exciting science?
If germline effects are the goal,
then there are other ways to achieve the goal
including some very low-tech ways that have been used
very widely for a very long time.
Well before the genes responsible, the mutations
responsible for Tay Sachs disease were discovered,
Ashkenazi Jewish communities were very good
and very careful about doing their best
to avoid giving birth to children with Tay Sachs
by doing careful family trees, doing, making different kinds
of reproductive choices.
So there are many things that one can do
even without you doing embryo selection instead of editing.
So some people have worried that we're
on the road to actually altering the human,
the global human genetic inheritance
by thinking this way about the use of genetics.
I'm not sure that that's really a risk
because it would have to be so widespread
for that to be the case.
But I think there is such a thing
as social desirability eugenics.
And I think that's one of the risks
that we need to face when we get beyond simply
thinking about the really serious genetic diseases
that face some of us.
So that's something to consider as well.
And the other thing is we have to remember
that we haven't found all the genes
that are responsible for all of the things
that we would most like to be able to control easily.
You know, there are people who talk about things like
well, if we just put a pill that contains
blood pressure medication and a statin
and something else, I forget what the third thing is,
in the water supply of the world,
then everybody would be better off.
'Cause we want quick fixes for all the complex
multifactorial common diseases
that everybody worries about like type two diabetes,
like hypertension and heart disease,
like different kinds of lung diseases.
So there are all kinds of factors
that we can't really control for
by manipulating genes.
But it is the case that we still are
in this idea that we can really figure this out
partly because the other things to do are very difficult.
They require an awful lot of collaboration.
They require collaboration between scientists
and politicians and communities
and different kinds of education.
And focusing on the germline when we're looking at
all of these complex disorders also raises something
another one of my cosmic questions,
which is what makes any one of us, us?
It's a much more profound question
than our DNA makes us us.
So but there is this perception and there has been
for a while that clinical application
would be a really great thing.
We're sort of barreling headlong in that direction.
And I think that's partly because you add
the cool technology to assisted reproduction,
and the cool technology is just what attracts everybody.
If that weren't the case, then we probably
would have been talking long ago about the need to,
you know we have a lot of discussions
about shouldn't germline genome editing
be available to everybody?
Well, we don't talk that way about IVF and PGD
and the other things that would help people
avoid passing on deleterious mutations
to their children.
And we don't really do a very good job
of regulating or overseeing the work
of assisted reproduction facilities.
And yet if we're gonna do germline genome editing,
it's absolutely built on that framework.
And that's not being talked about yet.
There are some reasons that everybody is really
excited about this.
But there is this idea that need can really expand it,
can really be expanded.
If you say well, there are certain kinds
of conditions for couples that can't be avoided
because they won't be able to make an embryo
that's free of those diseases to select, that's one thing.
But it's also the case that people have said,
well but you know for couples of low fertility,
they're not going to be able to make enough embryos
and so that's a reason to do genome editing
because they may not be able to create enough embryos.
Well, it's already the case that assisted reproduction
has moved from the octo mom to really only creating
very few embryos to begin with.
And so there are already self-imposed limitations there.
And the other issue that is sometimes offered is
well, I'm willing to use assisted reproduction,
but I'm only making one zygote because I don't want
to have to worry about the problem
of discarding a zygote with an embryo
with deleterious mutations.
And I think that's a really important religious
and philosophical position to consider.
But I don't think it practically actually makes
a lot of difference to the people who are actually
seeking the technology.
I think it is more likely to be a reason
that scientists can use to put the technology forward
'cause it's cool technology and everybody
would like to be able to use it safely.
So we were in this funny place
before the CRISPR babies happened, less than a year ago now
when He Jiankui appeared at the Second International Summit
for Human Genome Editing, having already made
YouTube videos about the CRISPR babies.
But having been kind of outed by an article
in MIT Technology Review, he was already scheduled
to give a talk at the Second Summit,
but he wasn't gonna talk about the CRISPR babies
who had just been born.
And everybody said no, you have to talk
about the CRISPR babies.
How can you not?
We could spend the entire rest of the talk
talking about what was wrong with what He Jiankui did
and what the fallout has been.
But immediately what happened was extensions
of the call for a moratorium that had been
going on already.
And at the very same time, there were people
who contacted He Jiankui immediately
and said we would like to add gene editing
to our assisted reproduction clinic.
Can you help us?
And a Russian scientist came out and said,
I don't care what anybody else says,
I'm gonna edit some more embryos and bring them to term.
So there's a lot that we can say about his ethics
and his process and his science, all of which were lacking
in many respects.
But there are a couple of things that actually really
are important to take away.
One is that his professed reason
for the edit that he did, which was to snip out
a genetic variant that facilitated,
is one of actually many that facilitate access
of the HIV virus into human cells.
The reason he did that was he said, to protect people
against acquiring HIV because HIV positivity
is so very stigmatized in China.
We can unpack everything that that implies,
but one way of describing it is to say
this is using advanced science to address a social problem.
And there are many, many other ways
to prevent HIV infection but stigma against HIV-positive
people is most definitely a social problem.
And enhancing somebody's ability to resist
a viral infection is not actually a treatment.
These embryos were not HIV-positive.
It was just the risk that they would become HIV-positive
if they had unprotected sex or otherwise came
in contact with HIV-positive fluids
in the wrong sort of way.
This was an enhancement.
And so one of the things that absolutely needs
to be talked about is the role of enhancement.
So I'm a science fiction fan and a few of you,
if there are any Star Trek fans in the room
might recognize this as Dr. Julian Bashir
from Star Trek Deep Space Nine.
His intelligence was enhanced when he was a fetus.
And he was actually discriminated against
in Star Fleet when he was in Star Fleet Academy
because his extraordinary grades were regarded
as not something that he did, but something
that would have been genetically programmed into him,
it was not an achievement.
So you see those arguments about many things all the time.
But it raises the question of what kind
of a good enhancement is.
And one of the issues thinking about enhancement is
is it an intrinsic goods?
Is a particular enhancement something that everybody
would be better off having or is enhancement
what's called a positional good
that is it's only valuable to the person
who has it if other people don't.
For instance, if you want your daughter
to be a basketball star, you might want
to enhance her to make her taller
than she could possibly get by just the mere combination
of your genes with your partner's.
But if everybody has access to the enhancement
that can make you taller, well maybe she won't
make the team after all.
So positional goods tend to create an enhancement
arms race of sorts.
But you can't necessarily draw the line
brightly between them.
One of the things that some bioethics scholars
have actually argued, that because the only way
to achieve enhancement is through something
like gene editing of early embryos,
the only way to achieve some meaningful enhancements
that the real reason for pushing forward so hard
with genome editing is because
we're interested in enhancement.
And one of the questions then is can we draw a bright line
between enhancement, whether positional
or intrinsic and treatment?
And it used to be the case that people thought
that it was pretty obvious what's treatment
and what's enhancement.
And it's come clearer that really the distinction
is context-dependent.
It's not as clear as you might think.
The challenge with enhancements is that
how do you actually measure them?
Because what you're supposed to do in research
is determine whether the balance of the harms
and benefits that can come from the research
is actually on the side of benefit.
And that includes benefit to society at large.
It's not primarily about benefit to the
individual research subject.
But how do you measure that when the benefit is
already being added to somebody who is already
normal and healthy?
So, suppose you decide you want to do research
to make it possible for people to have night vision
or to be better tolerant of heat as a means
of addressing climate change.
How do you balance the harms and benefits
if everybody already is normal and you're,
you want to add this ability to them?
It's really hard to figure out how to decide
whether research is gonna go forward.
And it's also really hard to figure out
whether the good that you're looking for is something
that's positional or intrinsic because of the context.
Because we might easily say gosh, if only we could
increase everybody's intolerance for heat,
wouldn't that be a really good thing?
Well, we actually already do that for crops
and we do genetic enhancements for animals
for feed animals.
It's possible genetically to dehorn cattle
rather than actually cutting their horns off
as they develop.
And that makes it easier to raise them
in a contained space.
Is that actually a reason to enhance them
in this particular way or could you change the context
in which they're being raised
and accomplish the same good?
See I'm getting to the point where we begin
to realize how complicated it is
to situate what looks like really cool science
in a very complicated society.
So the issue of enhancement then becomes
way more complicated than it looks at first glance.
I've kind of already said this.
There are lots and lots of ways to address some
of the problems that we would want to face
through enhancements that are really low tech
and simply far more complicated and difficult
such as minimizing your susceptibility to HIV infection.
That requires behavioral change, not necessarily
a genome edit.
And so you have to talk about justice
when you begin talking about really high-tech
very expensive technologies that are not necessarily
gonna be available to everybody.
We could easily see how focusing on the desirability
of inheritable genome editing could increase
health disparities related to income inequality.
One of the risks is what people in sustainability
call path preclusion.
If you're focusing on this way of addressing a problem,
do you still have the where with all
to focus on these other ways at the same time?
So that could be an issue.
There's lots of non-genetic ways that everybody
is working really hard at to reduce health disparities,
and it's gonna take a really long time,
and it's hard to be successful at that.
But it's a profound civil commitment.
So what if we just made genome editing
available to everybody?
Would that solve the problem?
Well, we could do it a lot more cheaply
if we just made IVF and PGD available to everybody.
Would that solve the problem?
Well, it would if you already know
that you have a particular susceptibility
to a particular disorder and the genetic variant
that is responsible for the disorder is known,
then you can do effective IVF and PGD.
But that might not solve everything either.
Arguably we're very in love with science
and maybe a little too in love with science.
As long as we can be realistic and recognize
that isn't as quick and easy as we think it is,
we'll be getting somewhere.
But you know, making progress in society is still
probably not gonna be quite as quick
as making progress in very highly technical science.
So what I wanna do is make sure that we can avoid
path preclusion and move down this road
while still working on all of the other things
that affect health and well being
that absolutely need attention.
We need to have both things going on.
And when we come to talking about germline
genome editing, that requires thinking
about global governance and oversight.
I mentioned being on the Recombinant DNA Advisory Committee
back in the day.
Well recently NIH decided that gene addition research
was no longer really problematic.
And so the RAC has been disbanded.
It's being reconstituted as something called NexTRAC
which is going to look at a wide range
of emerging bio technologies.
But it's not gonna have any, it can have some
oversight authority and some authority
to write reports and so forth.
But it's not going to have any regulatory.
There are currently two international groups,
the WHO Expert Advisory Committee
on Developing Global Standards for Governance
and Oversight of Human Genome Editing.
That's a mouthful.
And the International Commission,
which is composed of the National Academy of Medicine,
the National Academy of Sciences
and the Royal Society of the UK.
Both of them are meeting.
They have broad mandates and they're gonna produce
all kinds of reports.
And they're having all kinds of meetings
and you can go online and you can watch
all the presentations and get all the PowerPoints
and it's really high level stuff.
But it's still the case that now that sort of
He Jiankui has kind of breached the bringing this
to the clinic gap, it's gonna be very difficult
to regulate effectively or control internationally.
And one of the things that seems really clear now is
that whereas before, well before the National Academy's
report on human germline genome editing
where they seemed to open the door
to say there could be clinical applications
in the future, people were still talking about
well maybe we shouldn't quite go there.
But after He Jiankui, it seems very clear
that the question not is whether we should
go down that route, but when.
And so all of this is gonna be an exercise
in a certain degree of arbitrariness
and we're not going to get rid of the need
for assistive reproductive technologies
which are still largely unregulated
and still essential to the process
if we're going into the clinic.
So there's still a lot to be thinking about.
And yet we're still really not there.
It is still fiction because what He Jiankui achieved
was extremely minimal by the most generous thinking
about this technology, which was pretty poor.
So how long is it gonna remain fiction?
That's really a question.
If we don't have a mechanism for doing good followup,
we're not gonna know what's going on
and how well it works.
The idea of global governance is really a bully pulpit
and what I'm hoping for from these international commissions
is that everybody is really gonna start talking together
about some of these issues.
And that really means talking about the role
of in vitro fertilization and the implantation diagnosis
and identification of deleterious mutations
that everybody agrees we should be thinking about
and all of that.
Patience is really the virtue that's most important here
because there are a lot of technologies
that are just now beginning to bear fruit
and we shouldn't have expectations that are too high.
And right now expectations are simply running very high.
So if we know this is coming, what should
we be thinking about?
Well, it's probably illusory to think
that we can actually reliably distinguish
between treatment and enhancement
and say treatment applications are okay
and enhancement applications aren't.
That's gonna unravel.
Novel bio technologies, we're still trying
to figure out how to address them.
What should the regulatory posture actually be
is still a really big question.
But what I think is that the best practices
have to do with basic research
and very careful clinical translation
because what we tend to forget so often now
as the news cycles sort of outpace stepping back
and thinking about science, is that the goal
of science is generalizable knowledge,
not benefit to individual research subjects.
Research, individual research subjects may be more likely
to benefit with some of the novel bio technologies.
But that's not really the primary goal of the research.
The research is to learn things that benefit everybody.
And there is a lot of really interesting basic science work
going on in the lab with human embryos
under 14 days 'cause everybody follows the 14-day rule.
And in fact there's an American, Kathy Niakan,
who's been working in the UK for some time
and has learned some really important things
about embryogenesis and about causes of infertility
and all kinds of things that we really couldn't
actually see before at all until CRISPR
made that possible.
And that's the kind of research that I think we need
to really foster, much more so than clinical applications.
So the goal I think is to focus on that kind
of knowledge production and make sure
that if it's inevitable that there are going
to be, there's going to be clinical translation
that we have to be really careful about what gets there.
And that requires sort of an agreement
about talking together about this,
about the scientific community and society really thinking
about where we want to take this technology.
So I really like this quote.
I've been sort of ridiculed occasionally
for liking this quote so much, which is now 50 years old,
from Hans Jonas, one of the very early scientist
pioneers in bioethics thinking where he says,
"Progress is an optional goal,
"not an unconditional commitment.
"And its tempo can become compulsive.
"there's nothing sacred about facts.
"Slower progress actually doesn't threaten society
"even though it really awful for those people
"who are, whose families have a devastating genetic disease
"that hasn't yet been conquered.
"Slow progress is likely to pay off more."
And this is what I think is important.
"Society would indeed be threatened
"by the erosion of those moral values
"whose loss possibly caused by too ruthless a pursuit
"of scientific progress, would make its most
"dazzling triumphs not worth having."
Now what's unsaid there is which are the moral values
that we can least stand to lose?
But I think the germline genome editing actually poses
some of these risks because the rush
to the clinic actually makes it more possible
to lose some of the values of the underlying science
since our goal really is to improve health
and wellness for everybody on the planet.
We have to consider together the ethical issues
that allow us to get there while doing good science.
So that's where I'll stop and take any kind
of questions and comments you may have.
(audience applauding)
So I should take questions from the people
who are watching remotely first, if there are any.
I guess not, yeah.
(muffled speaking)
No, there has not.
(muffled speaking)
I believe that the Chinese government has actually
confirmed that the children have been born
and it has been done.
And at least for a while, the consent form
that he used was available.
And a number of science journalists
and also recently Hank Greeley from Stanford,
have written some really thorough pieces
going into what he did and how he did it
and the lack of success, and also about
how it happened that he was able to do this
so far under the radar.
So yeah, apparently the twins do exist.
I don't think anybody knows anything
about the third baby that he said was going
to be born soon when he gave his talk last November.
(muffled speaking)
Okay, so you're postulating that it's safe.
Well, I think one thing would be have you,
are you doing it in circumstances
where there is no other way to avoid bringing
to term an adversely-affected fetus.
Then you would have to say which conditions are,
and every one of these points has like a lot
of points embedded in.
Because even asking that question, have you picked
a condition serious enough, requires sort of
larger scale societal questions as like,
and I know this is a controversial thing to say,
but does everybody have a right
to a genetically-related child?
Are there other ways we should be thinking?
And if we decide, as we probably will
given our focus on individual autonomy,
that people should have other options made available
to them but they still might choose this route,
then we have to decide, we have to talk about
what are our criteria for saying a particular condition
is serious enough that this is the solution
that we should use.
You know, name any number of cases
that we can all agree about, like Tay Sachs
or Lesch-Nyhan and then others that we
won't necessarily agree about like Down Syndrome,
Huntington's, which is a devastating disease
but people can have very full lives
up to the point at which they begin to deteriorate.
So, it raises all kinds of questions
about what we can, about the lines that we draw
around normal and abnormal.
Which isn't to say that we shouldn't redraw those lines.
It's just to say that when we make these decisions,
we have to recognize that we are redrawing those lines.
And then the question of when do you get
to the point where you're talking about an enhancement
or something that could arguably be an enhancement.
So yeah, there are successor questions for sure
that are sort of at a level above the pay grade of the IRB
that we should be thinking about.
And I don't know the answer to any of those questions.
But I think there are a lot of 'em
and we should line 'em up now and start thinking about
how we should think through them.
(muffled speaking)
Well, thinking about some of these issues is part
of the research ethics teaching that we do
for medical students, for clinicians
who are becoming researchers.
I myself do some work with the Wake Forest
Institute for Regenerative Medicine,
that has a director who's very aware
of the need to do careful science.
We publish in these areas and I think one
of the big challenges is that bioethics,
like everything else, is sort of fragmented and siloed.
And one of the things that most concerns me
about the development of science and medicine
and bioethics now is that we need to find a way
to break down those silos and be able
to talk across institutional divides
and national divides about these issues.
So yeah, we haven't made a whole lot of progress yet.
Man: In China, bioethics are obviously stunted.
The proof in the pudding would be He Jiankui exposed
these babies to HIV.
Second question, theoretically, would widespread testing
in effective CRISPR technology in germlines,
you could eliminate sickle disease for generations.
(muffled speaking)
I know sickle cell trait protects against malaria.
We don't have malaria in the United States.
(muffled speaking)
-: Yeah, I wonder if you would absolutely need
germline genome editing to do it.
Man: I do sickle cell trait pairing.
And they wanna make a baby.
And you can eliminate sickle cell disease.
(muffled speaking)
-: Effectively treat baby, that would be.
Man: Embryo.
-: Okay, well if you have two folks with sickle cell trait,
they're not gonna make, all of the embryos
created by IVF aren't gonna be sicklers.
But as to your first point about what He Jiankui,
wow, you know there's an experiment
that I don't think anybody would every approve of.
But I wouldn't characterize China as backward
in terms of ethics.
There are actually some very good bioethics folks in China.
But here's the thing.
Here's what I think happened with He Jiankui.
And this is something that is, that could
really happen anywhere.
I mean he was on a fast track as one
of the young, brilliant scientists in China
and everybody was holding him up
as he was gonna be the great, shining hope
of his generation.
And he felt like he had to do something to fulfill it.
And so that kind of impulse to prestige
and academic glory, and he had several companies
that he was hoping to make money.
So all of those things exist everywhere.
They exist here and that's intentioned
with the duties and responsibilities of science
and with ethics, it's intention everywhere.
Man: The (muffled speaking) paper,
(muffled speaking) when you just look at the title,
it looks like a eugenics paper.
But if you read that last paragraph
it lays out a vision of having the genetic information
necessary to change the environments
(muffled speaking) in order to make them
socially successful.
It doesn't say it's just the opposite of
(muffled speaking) and that's the only place
I've ever seen that.
And I wonder if you've seen that kind of way
of articulating the role of genetics in other places.
-: I think that's something that people are trying
to do, and the Belski paper did it the most successfully.
And that's why I find the paper so interesting
because the way it was framed was I think sort of
their way of getting out that message
where they didn't think they could get it out
without that very different sort
of eugenically tainted framing.
I think that's really actually important.
Man: Thank you for a very interesting talk.
If I'm understanding you right, you said earlier
in your talk that science, in effect science
has been or could be replying to social problems.
And of course I'm sure you're aware
that advanced science is oftentimes been
in reply to social problems such as
public health intervention.
So that's sort of the preamble to then my question.
The other pieces that you're defending is
you're not very optimistic about our ability
to regulate the use of these advanced
scientific techniques.
But what do you think about the value
of turning that question upside down
and instead of regulating use of scientific techniques
but regulating the kinds of social problems
to which those techniques are applied?
Do you think there's value there?
-: Well, I really think that we tend to avoid
the complex social problems because we view them
as just too intractable.
You know it's sort of like every academic medical center
has a big problem, especially if you're the
institution of last resort.
You have patients who have very complex medical problems,
very complex social histories and social circumstances.
And they bounce in and out of the hospital all the time.
And everybody tries to figure out
what to do with them.
And the people who are really making the effort
to figure out how to do with them,
are the people who are trying to figure out
well which medical technique can we use
to fix this person so that when they get out
of the hospital, they don't have to come back.
What really has to happen at the same time is
that the hospital needs to be connected
to the community resources that should be available
for those patients to help them,
to help them in every way other than
their actual medical circumstances
to survive outside of the hospital
and thrive outside of the hospital.
And we don't do well with that.
So if we focus more attention there
and we're able to bring the resources
of medical science together with community resources,
which we all try to do in our teaching
about the whole patient and understanding
the patient's circumstances.
If we were able to do that better and to focus more
on those things that everybody runs away with,
runs away from because they're too complicated
and they turn into political arguments,
I think we would be be better off.
So I like your idea of sort of turning things around.
I think we should keep trying to use science
on our most intractable social problems
but they can never be the fix that we hope
they're going to be.
So we have to work on all those other areas as well.
And you know, gene editing has to fit into that
because science is a social process.
(muffled speaking)
Well I think that this NexTRAC committee
that is being established by NIH could be that.
But it's just in the process of being assembled.
And I don't know whether there are any plans
for any other presidential commissions.
Maybe after the next election.
(audience laughs)
-: I'm afraid we're out of time.
Thank you so much.
(audience applauding)