[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.