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Jeff Botkin: Privileged to be part of this symposium today,
so my thanks to Eric, and Rudy, and the ELSI folks for the opportunity to participate.
ELSI, I think, probably is familiar to everybody: Ethical, Legal, Social Implications. This
has been my interface with the Genome Project initially, and Institute subsequently. And
as folks may know, one of the most innovative aspects of the Genome Project was the decision
early on to set aside 5 percent of the budget for research in this domain. This was important
for Congress at the inception of the initiative, and continues, from my perspective, to be
a highly important aspect of this whole enterprise. Personally, I would like to see this be a
model for other NIH institutes, but probably a topic for another day, and in an era of
more flush budgets, perhaps.
So I'm going to talk today about newborn screening. This has been the focus of my research in
recent years. I'm not going to talk so much about our research, but talk a little bit
more about the public policy issues, and how it may be that this technology that's emerging
might be applied in this particular context.
So we've talked already about the enormous progress over the last 10 years or so, and
it's been interesting to see the evolution in the discussion of ethical, legal, and social
issues over that period of time. I think it's fair to say that a lot of the discussion early
on was fairly speculative, and fairly high level about designer babies and those sorts
of issues. Much more recently, I think, we've gotten down into the weeds with the investigators
as technologies emerge to say, "Okay, let's think about the specific type of testing and
how it might apply to different sorts of clinical contexts." So we're moving into a much more
So here's my focus: Given the power of this technology to conduct whole-genome sequencing,
whole-exome sequencing, how can this technology be best used to benefit children? Might this
technology have an application in newborn screening, is the specific focus here. Little
bit different way of saying this is, if whole-genome sequencing is the new hammer, does newborn
screening look like a nail?
So let me talk a little bit about these programs; it may not be particularly familiar to everybody
here. Every baby, essentially, or almost every baby in the country is subject to newborn
screening. So 4 million babies per year; all states, districts, certainly all developed
countries around the world are engaged in newborn screening. So this is a -- become
a popular and effective mode of approaching disease treatment and prevention; single largest
application of genetic testing. So, obviously, that invites the question of, how might we
use these new technologies in this particular context?
Now interesting, this is the 50th anniversary of newborn screenings in the United States.
Massachusetts started their mandatory program back in 1963; big celebrations going on around
the country this year about newborn screening to celebrate the success of these programs.
Estimates vary, but probably somewhere around 1,200 children -- affected children identified
on a yearly basis through newborn screening.
So the key here is early identification. So these kids, for the most part, will come to
clinical attention at some point. The point is to detect them shortly after birth in order
to intervene, either through preventative or treatment mechanisms that would reduce
the morbidity, and sometimes mortality, for these particular conditions. What we've seen
over the last 15 years, and particularly over the last five, six, seven years, is an enormous
increase in the number of conditions that are being targeted. So 10 years ago, all but
four states were screening for only six conditions. Utah, at that point, was only screening for
two. 2013, all states screen for more than 30 conditions, and I'll talk a little bit
more about why it is that we've seen this transition in recent years. And it's, to a
significant extent, a technology-driven change, more so than a change in the basic philosophy
of the programs.
So here's how the -- here's how the system works: Blood collected from heelsticks in
newborns, preferably after 12 hours of age, because you want certain metabolites to build
up in the baby's system based on being ex utero rather than in utero. You want to do
it before six days of age, because some of these conditions -- and galactosemia being
a good example -- can lead to rapid decline, and sometimes death, in these infants. So
you have to get in there quickly, you've got to get the results back quickly.
Generally sent to state labs -- some commercial labs involved in this, but for the most part
a state lab enterprise -- and results are returned to the hospital and the physician
of record for the baby. And the attempt is to try to get these results back within two
weeks, for the reasons that I mentioned. If the program is not highly efficient with this
sort of throughput, then you risk babies dying before that information can be brought back
to bear on their clinical care.
Now, states report anywhere between about 98 and 99 uptake in this system; so, enormously
effective and efficient in that regard. The cost, again, varies by state, and these are
state-based programs, so a hallmark is variability, but generally in the ballpark about $80 to
$110, which is generally, in most states, charged to families. Now, actually, that's
the charge typically to the hospital; the hospital will then turn around, often charge
-- upcharge to the family, so the charge to the family's actually greater. But that's
bundled within the care bill that folks get after they've had a new baby. So you can see
that the cost is remarkably low for the size of test and the complexity of the programs
that we're talking about.
Now here's a fundamental issue that we'll come back to later in the talk. All states
now, except Wyoming and the District of Columbia, have a mandatory newborn screening program,
state mandated. So parental permission is not necessary, and this was the hallmark of
the program from very early on, and part of the aspect of moving to a state-based foundation
for the programs. There had been debate: Academy of Pediatrics was nervous about these programs
back in the early '60s when they first started; it was felt that we didn't know enough about
diseases. But advocacy organizations were effective in moving the testing into the state
environment, and the perception was that the benefits to the baby were substantial enough,
particularly with the first condition, PKU, to warrant a state mandate for testing.
Now, most states, 43, do permit parents to opt out, for either religious or philosophical
reasons. There are no religions that have anything specific to say about newborn screening.
So, Utah, for example, has a religious exemption, but our state is unclear about how anybody
would actually claim such an exemption based on a religious tradition. Of course, what
happens in the real world is parents may refuse, they may give a -- say it's contrary to personal
beliefs, and those are generally respected. Our state, at least, has not gone to the mat
with anyone to say, "Demonstrate that you are part of a religious tradition that has
newborn screening as an element."
But a central aspect of this is that the ability to opt out is not effectively communicated
to parents, and this is a background, fundamental problem with the larger system. The level
of education of parents is typically low, and we've found this certainly with our studies
with population groups across the country. Folks may be aware that a heelstick was done.
The baby will come back with a Band-Aid on the heel; they'll know something was done.
But as we talk with families about the fact that the babies had 30 different tests, they're
stunned. They had no idea of the extent of these programs.
So a brochure goes into the bag, along with lots of other stuff, when you go into the
hospital to a deliver a baby. Folks may get to read that days, weeks later, or perhaps,
typically, not. And so the ability to actually opt out is not effectively communicated to
folks, leading to a high level of support -- tacit support, at least, for the programs,
98 to 99 percent uptake.
So what would whole genome or exome sequencing look like in this context? What would be the
purpose of using this technology? And I've outlined at least a couple potential choices
here. Folks here may be able to think -- be more creative about possible applications
here, but one would be a primary screening tool for all newborns. Is that what we're
talking about here, as potentially implementing this technology within existing state-based
program infrastructure as a new way of approaching these sorts of applications? Or, we could
have primary screening tool as a commercial supplement to existing state programs. Parents
could choose, as they have the ability to do this as a supplement. And there have been
supplemental commercial newborn screening approaches available for quite a few years,
and you hear stories of that being a shower gift for a pregnant woman, is an expanded
newborn screening panel.
So here, I think, would be a distinction that came out of a conference here at the NIH from
a couple of years ago now: the difference between newborn screening, which we typically
think of as a state program, versus screening of newborns, which would be presumably outside
the existing policy structure that we've been talking about. Or this technology could be
used as secondary testing of affected infants. And as you'll see with my comments, this is
where I think the biggest *** for the buck is. Identify genetic variants and impact treatment
prognosis in affected children. These conditions are not well-characterized, there's quite
a bit of variability; much more needs to be known about the genetic underpinnings of those
that are genetic, and this may be a powerful line of research to better understand these
So one basic question is, can you get enough blood out of a dried blood spot on a filter
paper to do whole genome sequencing? And the answer is yes. It's challenging, but certainly
feasible. But note that the throughput issue here is important. Eric talked a little bit
earlier about, that we've come to an era in which whole-genome sequencing can be done
in two or three days. Here, think through what the implications would be for a state-based
program. And I've illustrated here numbers for two of our largest states in the country:
700 hundred births a day, 365 days a year; California, 1,500 births a day, 365 days a
year. So think -- we need to think through the challenges of how this technology could
be developed to the point that that level of throughput would be remotely feasible.
Here's some of the ethical challenges, though, and I've got a couple of slides about challenges
that these developments pose for us. Multiplex platforms offer rapid expansion of programs
beyond the evidence base supporting efficacy. It's a little bit of a complicated sentence,
but tandem mass spectroscopy was the key technical advance that enabled the rapid expansion,
within the last 10 years, of the newborn screening panel. And the point is, when you may be looking
for one, two, five conditions out of mass spectroscopy, but you get results on many
more, what do you do, then, with those results?
And tandem mass is a multiplex platform; I would say whole genome sequencing is a multiplex
platform. And as the American College of Medical Genetics, with their enormously influential
report in 2006, advocating for a uniform panel, but advocating what, for many of us, became
a surprisingly large number of conditions. Europe typically tests for half a dozen or
so conditions, or at least, many countries in Europe do. I think many of us were anticipating
that the evidence review process that the ACMG was undertaking would come back with
a similar sort of number; say we've got solid evidence that half a dozen conditions, or
eight, or maybe 10, would justify inclusion on the panel. Well, they came back advocating
29 conditions, and -- 29 conditions and 25 secondary conditions.
Now, we have limited data on many of these conditions, and there's wide variability in
how these are treated across the clinical community. So part of this was an assumption
with the ACMG process, that if you have the data, you have an ethical obligation to disclose
it. If there's something that you, as a clinician, or the clinical community, thinks you can
do for these babies, then, despite the absence of a carefully-controlled trial to demonstrate
those benefits, there's an ethical obligation to disclose.
So I think this is exactly the debate we're currently having now in the sequencing domain,
to say, "Once those results emerge out of your analytic process, what's your obligation
to disclose those to families?" And I think the fact that you're generating those through
this technology offers the opportunity to significantly expand the number of things
you're targeting, if, indeed, your conclusion is you have an ethical obligation to disclose.
My claim would be that conditions were adopted as part of that process that would not be
adopted with a condition-specific review, and I'll talk a little bit more in a second
about how the current review process works.
So a couple of other challenges. Research on rare conditions faces serious obstacles.
And so the reason we don't have good data isn't meant to be a criticism of the research
community, it's meant to be an observation about how challenging this entire domain is.
When you have some of these conditions that are 1 in 20,000 kids, 1 in 50,000 kids, some
of them 1 in 100,000, how do you do research on those? Any one clinician may only have
a couple of kids that they see as part of their life practice.
So without an opportunity to pool children across the country and have uniform approaches
to research on appropriate interventions, then our knowledge and confidence in this
whole domain will continue to lag. And I would draw the parallel with how leukemia care was
for kids 40 years ago. The decision was made to -- with Children's Oncology Group and those
sorts of systems -- to pool; put kids on protocol as a collaborative effort. And the progress
with the care of those kids has been enormous, because you're not dealing with individual
clinicians making individual-level decisions about what they think might be best. So this
would be a model that I would very much encourage us to think about in this context.
In addition, newborn screening programs take care of the kids until they're plugged into
a sub-specialist. Most do not collect data after the kids leave that initial phase of
their life. And so we don't have long-term data on how the kids do. How do we know which
dietary interventions are working best for kids? How do we know how well do we know how
well the programs in general are working, without that longer-term data collection?
So these are state-based programs, and the beauty of being a state-based program, at
this point, is that it's uniformly accessible for everybody. It's designed to provide this
service to every child regardless of their geographic location, economic background,
insurance status, et cetera. So that's been a pillar of this particular process, but that
does provide challenges for us in terms of the cost that might be absorbed as part of
that program, and I'll talk a little bit more about that.
So, as we talked -- as I mentioned earlier, newborn screening is mandatory in most states,
therefore we have to have, according to the -- if you're following the basic justification
for a mandatory program, that it's so beneficial to kids that you can't allow parents a choice
about this sort of thing, then you have to maintain that level of benefit in order to
feel comfortable in mandating tests that you may be uncertain about the long-term benefit.
So the scope of conditions to be targeted is a long-term debate in this domain. Duane
Alexander, former head of NICHD, and Peter Van ***, HRSA, had -- wrote this paper in
2006, and this has been much discussed. And what they were suggesting was that the technology
changes may lead us to the point where we are thinking about what conditions we won't
put on newborn screening panel. Their suggestion here was, "Well, maybe we won't test newborns
for Huntington's disease," as a relatively extreme example, but that then opens the barn
doors quite wide for almost anything else that would be less contentious than something
like Huntington's disease in a newborn.
So here's the problem: Wilson and Jungner were the crafters, some 50 years or so ago,
of the original criteria for population screening; not newborn screen per se, but just population
screening in general. And they said this general idea of early disease detection and treatment
is essentially simple; however, the path to a successful achievement is far from simple,
although sometimes it may appear deceptively easy. The population, and I think clinicians
in general, really like the notion of screening. It makes so much sense: Why don't we just
look for these things early and do something about it? In practice, though, they're much
Here's a more reason contemporary synthesis for the criteria for population screening,
by Andermann. I've just highlighted a couple here that are particularly relevant to this
conversation. You should have some objectives. What's your objective, what are you looking
for? Do you have scientific evidence of effectiveness? Have you informed choice about the screening
modality? So meeting these sorts of criteria is an enormous challenge.
In addition, you have to have a philosophic foundation about what it is that justifies
your enterprise. And this was a statement from the Institute of Medicine about newborn
screening from back 1994: "Newborn screening should not be undertaken unless there is a
clear, immediate benefit to the particular infant being screened." So this has been one
pole, and this is what Duane Alexander and Peter Van *** were arguing against, to say,
let's move away from this "big benefit to the baby" criterion, and think about benefits
to other people.
Now you can see, in this circumstance, where the baby may not benefit at all, let's say
for a particular modality. But parents are informed that they're at risk for bearing
a second child. And they're informed in a timely manner, before they get pregnant again.
Or you might say what a tremendous benefit, and there is certainly literature out there
to strongly support this, these parents go through a very difficult time, frequently,
with these rare conditions, in getting to a diagnosis. The so-called diagnostic odyssey
is a significant burden to families. Newborn screening eliminates the diagnostic odyssey;
benefits families in that regard, even in the absence of any particular benefit to the
baby. So there's where the debate is focusing: Are those benefits to other people, specifically
parents, of sufficient magnitude that we don't need benefits to babies any longer, or do
we want to hold fast to this particular principle?
So wide variations from state to state on what was tested for; that's changed now with
the ACMG statement, and in part what's happened -- in large measure, what's happened is there's
a new body there, Secretary's Advisory Committee for Inheritable Disease in Newborns and Children,
of which I'm a member; and this is an evidence-based process to try to tackle this question: What
ought to be part of the newborn screening panel? Much more rigorous process for condition-specific
decisions to get onto the so-called recommended uniform screening panel. So it's condition
specific. You show me -- and this is what the Secretary's Advisory Committee will say
-- show us the population-based studies that demonstrate the improved outcomes with early
detection for this particular condition.
You'll be happy to know I won't go through this in detail, but this is the rubric for
decision-making for the Secretary's Advisory Committee. They look for benefit for the baby.
They look for readiness for programs to implement the testing. They look for feasibility that
has to do with quality of the test: sensitivity, specificity, cost, and able to conduct it
with throughput that would support a population-wide approach. So the general point is here, we've
tried to get much more formal and specific about the process by which these conditions
would be approved.
So the point of the next couple slides is just that population screening is a real challenge.
And again, despite its intuitive attractiveness, in fact making it work is a problem. And we
have many conditions for which we don't either have good data to suggest efficacy, or data
to suggest that they don't work as well as we might hope.
So this is the U.S. Preventative Services Task Force set of recommendations. They don't
do newborn screening, but they have commented in the past, reviewed in the past, PKU, congenital
hyperthyroidism, and sickle cell disease, which get a grade A. Newborn hearing screening,
though, gets grade B; and other things like iron deficiency, insufficient evidence; lead,
grade D. So you can see that in things that would seem to make sense in general, oftentimes
are challenged to achieve -- meet the demands of a rigorous evidence review process.
In adults, a similar sort of process here: colon cancer, pap smear, hypertension, tobacco
use; these are all things that U.S. Preventative Services Task Force at least thought merited
a grade A for their utility. But lots of debate about these things: PSA screening, grade D;
mammography is grade B. This has not been informed by some of the more recent literature
about mammography that has raised more questions about its efficacy, but things like osteoporosis,
and even behavioral -- history in behavioral counseling for cardiovascular disease, they
gave a grade C. And this is not to say that they're -- that this is all the right answers
for these things, but just to highlight for you the challenges associated with population-based
So what are we screening for? We could be screening for established conditions already
in the newborn screening panel, but potentially move to a DNA-based platform for that. Not
clear, though, in many circumstances, that genetic tests, or DNA-based tests, are more
sensitive or specific than current test modalities. A good example is cystic fibrosis: We know
a lot about the genetics of CF, more than 1,000 different mutations characterized, but,
IRT, immunoreactive trypsinogen, is still the initial screening on newborn screening,
and the definitive test for kids identified is still the sweat test. So we're still not
-- so DNA-based analysis is part of the testing sequence, but it's not the definitive diagnosis
or the triggering test being used. So there's questions about whether products of metabolism
may continue to be better tools for screening than DNA-based tests.
Now, there are some new ones coming along. SMA, spinal muscular atrophy, for example,
looks like it's got a test with good sensitivity and specificity. Folks have been talking about
Fragile X newborn screening for a while. So it's certainly possible that variety of tests
that may be emerging over the coming years will be DNA-based analyses, but these are
probably going to be conducted as targeted tests, as opposed to a whole-genome or whole-exome
So there's no question that this approach would enable a large expansion of conditions
targeted. Now, the ACMG, just in the last month or two, has come out with a statement
that provides some significant analysis of conditions which they consider to be actionable,
and that ought to be part of every sequence conducted at laboratories conducting this
type of work. Fifty-seven genes and 24 different conditions are on this list, so that presumably
would part of a potential panel for newborn screening. Carrier states, of course, are
ubiquitous. Cancer syndromes that are also part of the ACMG list, but just to highlight
these: These may be adult or pediatric onset cancer syndromes. And then, of course, there's
a whole host of things that are part of the emerging landscape out there; the 23andMe
sort of testing results, where folks can get putative results on what their relative risk
is for a whole host of conditions, like diabetes, or heart disease, Alzheimer's, ear wax, et
So all of these things could potentially be part of this panel if this is the type of
data that's being generated out of the newborn period of time.
So we looked specifically, then, at the ACMG list of 57 genes, 24 conditions, as an initial
target subset here; estimates that about 1 percent of those individuals will have positive
findings. Back of the envelope calculation for million babies born per year: that's 40,000
kids with positive results; that's three to four times the current rate of true positive
results within the system. And obviously, that number would be substantially larger
if we're talking about carrier states, and other conditions.
We have no infrastructure to deal with anything close to that volume. Primary care providers
struggle with the newborn screening system now because they don't understand the diseases
very well, and they're heavily tied on the state programs and local experts to help manage
these kids. Primary care providers, I can tell you, certainly aren't prepared to deal
with this flood of information, and we would question whether we have the subspecialty
population to genetic counselors to be able to deal with this. Now, if it's worthwhile,
of course, we'll develop those resources. But at the present time, they don't exist.
So here's another ethical angle here that's been part of the recent debate. This type
of information would generate information on adult onset conditions in a newborn. Now
the new report out of ACMG recommends reporting these to parents for the parental benefit.
So if you find a BRCA1 in a baby, that's not immediately relevant to that baby; it may
well be in 30 years, but it's relevant to one of the parents who's -- you're pretty
sure is a BRCA1 mutation carrier. So you would report the results out on the baby because
the parents might benefit from that information.
This is a highly contentious element of that recent report because the tradition has mostly
been not to screen babies for adult onset conditions. You screen kids for things you
can do during childhood, and this is a way of promoting the autonomy of the child, and
concerned about uncertain psychological impacts of risk information for both the child and
the parent, parent-child relationship. So this is a matter of much more debate going
forward, about what our ethical obligations might be for conditions of this sort that
are detected in that period of time.
So burdens of false positives. Most important adverse consequence of population screening,
we know there's parental anxiety associated with this. Cost of follow-up testing is one
of the biggest elements of the testing programs: finding folks, bringing them back in for confirmatory
testing. The positive proof to value for most of the current tests is 1 to 40 percent, meaning
the majority of positive results are false positive results. And as mentioned, we know
from long line of literature, that about 10 to 20 percent or so of parents remained concerned
about the health of their baby. The doc's told them, "Everything's okay, don't worry."
Well, they do worry. And anybody who's been a parent, and maybe anybody who's been a kid,
knows that this is a sensitive time of life, and if you're told something's wrong with
your baby, that's a big deal, at least for a subset of parents who have trouble getting
over that information.
And ambiguous results: We also know that oftentimes folks can deal pretty well with adverse results,
but they have somewhat more trouble, in many circumstances, dealing with ambiguous results.
Hard to marshal your defense forces when you know -- when you don't know what the status
of your result truly is. So these ambiguous results are with us for a period of time with
this type of sequencing, and would have to be decided about whether you would return
these results to begin with, and how you would help folks deal with this information.
Cost issues. Kit fees for newborn screening, as I mentioned, are about $100 or so, charged
from the birth facility. Incremental charges for new tests are often in the $2 to $5 range
per newborn, and we have an annual discussion with our legislature about whether those tests
are warranted or not, even though the cost is neutral from a state's perspective; they
approve the kit fee increase every year. And so if we think, just on "back of the envelope"
context: $1,000 genome, we'll assume that cost comes down, but some of the costs associated
with that won't come down; data analysis will -- is a human labor initiative; family notification
and follow up; costs for confirmatory testing; these sorts of things, of course, will exist.
So again, very simplistic sort of calculation here, for thinking at a day when all of those
costs might be bundled into $1,000, that's $4 billion per year for sequencing. Spending
$4 billion more for kids is a great idea, we would question whether this is the most
cost-effective way of spending that amount of money for the welfare of children.
So couple of quick conclusions, then. Current newborn screening system is highly effective
for some conditions, but struggles with funding, uncertain benefits for other conditions, and
lack of adequate research. Population screening is notoriously complex, and relatively few
instances of highly-effective population screening programs. So we have to have the evidence
that this approach will be beneficial to babies.
So whole genome/exome screening as a primary screening tool, I think would fundamentally
change the philosophy of the programs, increase cost, increase burdens of false or ambiguous
results, and confer uncertain benefits, without a much more robust system to conduct the research
and longer-term follow up. So given these additional burdens and uncertain benefits,
sequencing in newborn screening would not be justified under the state mandates. So
I want to come back to that foundational aspect. These are mandated systems, and you're very
hard-pressed to say that the state's going to mandate whole-genome sequencing for a baby
without clear evidence that that, at this point, is a compelling benefit to the baby.
So implementation of the informed consult process would be necessary. This could be
conducted as a commercial supplement without much difficulty, from that perspective at
least, and you could potentially get pre-natal consent for this. Now we currently have a
project, an NIH-funded project, to do pre-natal education about newborn screening; I can tell
you we're working hard with our OB colleagues to get 10 minutes of time to talk about this
issue. And so -- talk about newborn screening in general, much less what might be necessary
for whole-genome sequencing discussion.
So Lewis Thomas was a wonderful writer about biological issues, and he talked about technologies
at several levels. Non-technologies: counseling, hand-holding, support; decisive technologies,
which he characterized -- his prime example there was immunization, -- elegant and effective;
and the most creative aspect was this notion of halfway technologies, things that look
sophisticated, that are sophisticated at a certain level, but still are founded on a
basic misunderstanding, or lack of understanding yet, about the foundational aspects of human
biology for which the technology is directed. So, to a certain extent, I think the whole-genome
sequencing now, while highly effective and beautifully designed in many respects, still
is founded on a basic lack of understanding about how to translate this into effective
interventions for kids.
So, from my perspective, whole genome/exome sequencing makes little sense as a primary
screening tool, but makes enormous sense as a research tool to better understand the genetics
of a host of important complex, uncommon conditions. We need to better understand these diseases,
and this technology is beautifully designed to help us better understand these kids, and
bring more effective screening and treatment to affected children.
But, final point here, we need better research systems to ascertain short- and long-term
benefits of these screening technologies. We've got -- nobody wants to stop the development
of more sophisticated analytic tools, but we have to understand that we need those longer-term
systems that aren't quite as sexy, but they're going to provide us with the evidence about
whether generating this information confers benefits on kids or families, or not. And
in the absence of those sorts of systems, to draw those conclusions, we're going to
be stuck with a powerful technology and lots of uncertainties about the best way to use
it. So, in the Mecca of research here, I'm making a pitch for those systems.
Okay, thank you.
Eric Green: We have time for a quick question. Is there
anybody going to a microphone? If not, I guess the question I guess I would have for you,
you made the point earlier that educating parents, even about current newborn screening
routines, is very difficult, and uptake is actually very poor. Is it -- if we ever move
to a world of newborn sequencing, would it even make a difference, or are we so -- are
people so low on a learning curve in uptake that it's almost a trivial difference for
Jeff Botkin: Well -- and I have some hope with innovative
educational modalities, to improve parental education about this. And what the public
surveys consistently show is everybody says, "Why don't you talk about this during pregnancy?
I've got nine months, I'm very interested in anything about the baby, let's talk about
it then." So I think there's opportunities to do that. But I would have to say, and this
is a little bit more of a skeptical angle on the response, it's not been clear to me
that health departments have wanted a robust education outreach, because everybody signs
up for this. The more they know, then they're afraid the more folks are going to say, "No."
I think that's not correct, but that's an empirical question that we hope to answer
with some of our work.
Eric Green: Okay, we're going to move on, because -- we're
going to actually switch the program slightly. Our next speaker is David Williams, and Dr.
Williams has a lecture he has to give this afternoon back at Harvard, so -- and he has
an airplane to catch, so we're going to switch it around and do the video right after his
talk. And so we're going to now hear Genomics and Disparities in Health and Health Care:
Challenges and Opportunities.