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[applause]
Eric Green: Well., thank you very much, Ruth, and thanks
to all of you for joining us here this evening for something, I think, is going to be very
interesting and, I think, quite enjoyable. What I thought I would do to set the stage
is to acknowledge the fact that we have, I'm sure, a heterogeneous audience, and, at the
same time, I think some of the concepts we're going to delve into when we start engaging
our two debaters will get quite technical.
So, I thought I would just spend a few minutes to sort of giving a little bit of a background
to get everybody sort of on the same page. And in part because so much has happened in
genomics in the last 25 years that to really appreciate the issues we're going to discuss,
it's important to understand the context.
So, just some simple introductory 101 material what we're talking about. Keep in mind that
the human body consists of about 10 trillion cells, and every one of those cells is operating
off of the same blueprint information, and that blueprint information is housed in the
structure of the cell called the nucleus, structures called chromosomes, which is sort
of the suitcases that carry our genomic and genetic material from one generation to the
next. Of course, the key molecule we're going to be talking about in this debate is DNA,
deoxyribonucleic acid, which, of course, is the information molecule for all living systems.
And all of the material that makes up human DNA is called the genome, all the chromosomes
and all the DNA that really represents the human genomic blueprint is -- consists of
about 3 billion bits of material, or bases is what it's called, little chemical units
which we abbreviate G, A, T, and C because it's really just four different chemicals
or letters, if you will.
Well, tools and technologies came available really about 30 years ago that allowed scientists
to start to imagine going through and reading out, decoding our blueprint, figuring out
the order of these 3 billion bases that make up our blueprint. And this lead to something
that occurred that began in 1990 called the Human Genome Project, which really changed
everything. This was a large international effort involving thousands of scientists and
researchers around the world, actually -- the United States playing a very major role -- that
basically aimed -- and, in fact, the institute I now direct was created by the U.S. Congress
to lead the U.S.'s effort in the Human Genome Project. And its goal was quite straightforward:
determine the order of the 3 billion letters that make up the human genomic blueprint.
That project, which I was involved in from beginning to end, was wildly successful, and
13 years after it started, it ended, about 11 years ago. In fact, last year we celebrated
a tremendous amount of -- a tremendous number of ways recognizing that we had now had 10
years of having the complete sequence of the human genome in front of us and available
for study.
Now what's happened in those almost now 11 years since the end of the Human Genome Project
that really leads us to the issues that we're going to talk about tonight? And what I can
tell you is there has been spectacular progress in the field of genomics, and we are learning
a lot about what each of our genomes look like and what all people's genomes look like.
Now, let me give you some information and give you some ideas about what this is like.
So, shown here, is a bit of the human genome, but actually, keep in mind that your human
genome, a person's human genome, is actually 6 billion letters. It's 3 billion you got
from mom and 3 billion you got from dad, so, in total, each of us is basically consisting
of 6 billion letters ordered that represent our collected genome. And, by the way, if
you look at this slide, note that what's shown there is only one bit of the genome; actually
6 million times larger would represent -- would be needed to represent your entire genome.
Now, what's happened in the last 11 years? Eleven years ago we had laid out all these
letters, and then it was time to start interpreting what they meant, learning the grammar, learning
the language, learning the syntax. And we've learned quite a bit, and we now know when
we can, sort of, almost annotate and recognize that within your 6 billion letters are operating
about 20,000 genes. Genes are the bits of DNA information that make the building blocks
of cells and tissues, things called proteins, 20,000 genes or so. But it's actually far
more complicated than that because it also turns out there's hundreds of thousands of
other functional sequences, sequences that determine where and when genes get turned
on, and each of our cells actually operates that blueprint a little bit differently, whether
it's a muscle cell, whether it's a liver cell, whether it's a brain cell, and this incredible
biological complexity in those hundreds of thousands of other functional sequences that
are telling those 20,000 genes what to do and when to do them.
The other thing we've learned besides understanding a lot about the functional landscape of the
human genome is that we've also now done studies to start to figure out how all of our genomes
are different from one another. And so across your genome compared to the person sitting
to your left or the person sitting to your right is about 3 million to 5 million letters
that are different. Shown here are just three places across the genome that there might
be a difference compared to the person sitting next to you. You may have a G at that top
position and the person sitting next to you might have an A, or the middle position there
might be a C versus a T and so forth. So across your 6 billion letters is about 3 to 5 million
places that there's going to be a letter difference. And wouldn't it be really fascinating and
incredibly motivating to figure out which of those letter differences that each and
every one of us have might have a consequence for things like our health and disease, and
we know that differences among our genomes are -- really have a tremendous amount to
do with what diseases we're susceptible to, how we respond to medications, and various
other traits that are important.
Well, the third major development that's taken place, besides understanding how the human
genome works and understanding out human genomes are different among people, is a significant
surge in our ability to actually read out the letters of DNA. And here has been spectacular
advances, in particular over the last six or seven years. And it really relates to the
plummeting costs of being able to sequence human genome, and I'll show you here sort
of an icon form of a graph, and in particular, notice the lime green. When we sequence that
first human genome as part of the Human Genome Project, it cost about a billion dollars.
And it was a brilliant investment because it was foundational information for humankind
that we will forever use. But it was, by no means, a medical test for a billion dollars.
Today, just a few thousand dollars to do it. Within the next year or so, we think we'll
have crossed the threshold of a thousand dollars. In fact, we refer to something called the
$1,000 genome. And notice in green how that curve has been coming down, and now in 2013,
it's approaching that $1,000 threshold. Not quite there, but getting closer and closer
every day.
And it's been remarkable -- and $1,000, well, for $1,000, that sounds like about the cost
of an MRI or a lot of other clinical tests, which is why the idea of being able to seek
tens of thousands of people have started research studies, and also considering sequencing individual
genomes of patients has come to the forefront. And let me just tell you that these technologies,
which I show here in the slide, are truly revolutionary, remarkable, and I'm showing
actually the top two of those to actually hold in my hand, little chips, little slides,
little channels that now can sequence what used to take five and six years when the Human
Genome Project did it to sequence that first human genome can now sequence any one of your
genomes in about a day or two. And what's also way cool is the image I show on the very
bottom, because this is a new technology that's actually coming out this year, in fact, it's
probably starting to hit some of the research labs this month, is a company that happens
to have a very fancy new technology that literally plugs into the USB port of a laptop and will
allegedly -- and we'll see how good it is when it really comes out -- allegedly it will
sequence the human genome in about a day. Truly remarkable, you can do that from a laptop
such as the one I'm using here to show you these images.
So this really sets the stage for what we now face because we now have the technical
capability to read out Gs, As, Ts, and Cs from any person, and for very inexpensively
in the grand scheme of things, in a matter of a day or two. And with that comes all sorts
of ideas about how we might be able to use genomic information about patients as part
of their medical care. That all sounds great, right? It all sounds pretty simple.
Well, of course, it's not that simple. It's not that simple for a lot of reasons, because
the fact of the matter is, just because we can sequence somebody's genome, and we could
lay out in front of you the three to five million letter differences in this patient's
genome, it doesn't mean we yet really understand what those differences mean. And there's a
lot of other implications of not being certain exactly how to act on that information and
who should get that information, et cetera, et cetera. It is a complicated circumstance,
especially at present.
And so this is why we're going to have this discussion tonight, from two extremely talented
and articulate scholars of the field. And all of this is being cast in a broader net,
if you will, of what we think about and care a lot about, certainly at the National Institutes
of Health and the institute that I direct, but I think the whole field of genomics, is
the recognition that the science has marched forward in a spectacular way over the last
25 years, but similarly, I think we've been very responsible in also recognizing that
this science and these opportunities fit within the context of society. And we very much have
been engaged in studying the ethical, legal, and social implications of what we are doing
as these genomic advances have marched forward. And I think you will hear from tonight two
of the individuals who think deeply about some of these societal implications of these
genomic advances, and we very much want to hear some of their thoughts, and then we want
to have you question some of the things that they have to say and things that are on your
mind.
I will tell you that tonight's debate, tonight's program, is part of a larger program of events
that are taking place that very much represent an example of the way our institute is very
interested in engaging the general public about issues around genomics, and also our
recognition that to really see this come to pass, we need to make sure that the general
public understands genomics and really can grasp what we think healthcare professionals
are going to be talking to them about in the future.
And this program is part of a series of sessions that we're having associated with a new partnership
that our institute created recently with the Smithsonian Institution, in particular the
National Museum of Natural History and all this was built around a new exhibition called
"Genome: Unlocking Life's Code," which opened last June and is right here across the mall
on the second floor of the National Museum of Natural History in Hall 23 immediately
left of the Hope diamond, so if you're ever --
[laughter]
-- next time you're there, go to the Hope Diamond and immediately turn left and you'll
come into our exhibition. I just heard today that nearly 1.6 million people have visited
this exhibition since it opened in June. It will be there until September, and then it
leaves to go around North America for four to five years to travel and be viewed at other
major museums.
So, that is the context of the science, the context of the debate, and importantly, all
this fits in as a related program for this exhibition, which if you haven't seen, if
you're motivated to come out here on a Thursday evening to hear about genetic and genomic
information, I tend to think you're interested in this topic, and I really hope if you haven't
seen the exhibition, please come and visit it. I think you'll be very pleased, and I
think you will also very much appreciate that what's in the exhibit and what's talked about
and issues that are raised are some of the same issues you're going to hear from these
two experts this evening.
So, with that as a background, I would like to introduce our first of the two speakers.
And the plan for tonight is as follows: We're going to hear about a 20-minute presentation
from each of our two scholars. Susan is going to go first and Robert is going to go second,
and after which I am going to ask a series of questions to kick things off, and then
we're going to take an intermission. As you heard, you're going to go out and you're going
to have a chance to write some questions on cards as well, and then we'll come back in
after the little brief intermission and refreshment break, and I will moderate the discussion
using your questions as the material to sort of probe our speakers a bit more.
So, our first speaker is Professor Susan Wolf. She earned her J.D. degree from Yale Law School
and also did graduate work at Harvard University. She is now the McKnight Presidential Professor
of Law, Medicine, and Public Policy, Faegre Baker Daniels Professor of Law, and Professor
of Medicine at the University of Minnesota. She is also a faculty member in the Center
for Bioethics at that university. Professor Wolf focuses her scholarly work on studying
the legal and ethical issues in health care, biomedical research, and emerging technologies,
including genetics and genomics. And it was this interest that brought her to be the founding
chair of the university's Consortium on Law and Values in Health Environment and the Life
Sciences. Professor Wolf is an elected member of the National Academy of Sciences, Institute
of Medicine, a fellow of the American Association for the Advancement of Science, a member of
the American Law Institute, and a fellow of the Hastings Center in New York. In 2011,
she was appointed by the Secretary of the Health and Human Services to the National
Science Advisory Board for Bio-Security, and her research has been funded by the National
Human Genome Research Institute and the National Cancer Institute of the National Institutes
of Health, but also the National Science Foundation, the Robert Wood Johnson Foundation, the Greenwall
Foundation, and others. She is truly a scholar. She has authored, co-authored, and edited
over a 150 publications and journals that include Science, Nature Genetics, the New
England Journal of Medicine, and the Journal of American Medical Association.
So, with that as an introduction, we're going to now hear from Professor Susan Wolf.
Susan Wolf: Thank you, Eric.