Thank you thank you very much good
afternoon we're gonna have a good time
together no slides dialog with the
audience and I'm gonna begin by asking
you to reflect on a question or two
should your you get bored with me and
your minds wander a little so the
question is what role should society
have in trying to improve the human
species we'll leave that as a background
question now before I launch into the
formal remarks I have and I encourage
questions and discussion at the end I
just wanted to tell you how pleased I am
to be here this institution has been
part of my life for 25 years or more
there are some close friends in the
audience I'm honored to have Dr. Watson
here and I'm most honored that all of
you have come here I'm assuming most of
you are not scientists or physicians but
you care deeply about your society and
you realize the power of science and
where it may take us so much of what I
had to say will reflect on people and
how people have thought over the last
century about human reproduction I've
divided the talk into sort of three
parts one as Bruce suggested an
historical review of eugenics from about
1900 to just after World War two with a
little bit into the 40s and 50s then a
topic you may not be thinking so much
about and that is the current role of
involuntary coercion of reproductive
behavior in the world at large a topic
that I published on recently so I'm
drawing that and finally and perhaps
most interesting for you I see there's a
lot of people in the- in the room
are who probably have children or
starting families you're about that age
what about the future uses of technology
and human childbearing and I think that
is where I had the most surprises for
you in the most cause of
reflection so having laid that out
let me let me begin if one wants to just
begin with the word eugenics one traces
it a word that means in the Greek more
or less good birth to the work of a
polymath in England named Francis Galton
published the term and word first
used in 1883 in a book called Hereditary
Genius itself a term laden with value
one can have a very spirited and
appropriate debate about what extent
genius is hereditary or to what extent
it requires a deep nurturing environment
as well but these this this work was
arose at a time that both in the United
States and in Western Europe
particularly England there was what
historians today call The
Progressive Movement and I'm mentioning
this particularly because often the word
eugenics has cast in a very pejorative
light and I think it is fair to say that
was in the vast majority of cases not
along and I'll point out some of the
some of the negatives in the history it
was a well-intentioned idea just think
about the United States the Civil War is
over the nation is recovering both
politically and economically and there's
a movement afoot as the economy gets
better how can we help our fellow man
that's really what The Progressive
Movement was about and over the course
of 30 years you saw a remarkable series
of events in the United States that sort
of reflected this the first institutions
to house and help the mentally retarded
the mentally ill for schools for the
blind for schools for the deaf to try
and educate people who had been
marginalized in society all that I'm
sure you would agree whether futile or
not is another question but was
well-meaning now there was another theme
and that was the theme that we couldn't
help most of those people very well and
because of the burdens they had and
wouldn't it be better if we used our
resources in a caring way to reduce
those numbers in
society looking forward and we'll come back
to that at the at the end of my talk now
in England the currents the Eddies of
this thinking really did focus around
what was what the historians have come
to call positive eugenics using
information to help people have larger
and healthier families to nurture to
nurture children things like that that
was true in the United States as well
but for reasons that are maybe a little
difficult to follow in the United States
and in some countries notably Germany in
the middle of the war the Second World
War the focus became one of negative
eugenics that is if we can't fix it
let's take the people that are most at
risk for bearing children with severe
disorders let's limit their childbearing
a pretty in our society day a pretty
challenging thought but one that gained
that gained of traction in the United
States let me just remind us give you a
couple of facts that I know from my own
research in this area that's kind of
astounding around nineteen hundred bills
proposing to authorize state agencies to
limit reproduction through sterilization
we're extremely common in the state
legislatures one one year when I was
doing research for one of my books I
counted that they one year six hundred
bills were introduced in state
legislatures that proposed in some way
to limit reproduction by folks now why
and now I'm connecting back to not
directly to the work done at Cold
Spring Harbor but to the notion of a
scientific world at that time 1900 1910
in the thrall of what we call Mendelism
I'm assuming most of you aren't
scientifically based or don't have that
background the notion of that even the
most complex human characteristics
particularly if they were disease oriented
might be explicable by a single gene
and therefore the classic inheritance
patterns of autosomal dominant like
Huntington's disease; autosomal recessive
like Cystic Fibrosis or Tay-Sachs disease and
with our limited knowledge the extension
of this thinking far exceeded the
knowledge that we had to justify it
now as Bruce suggested for a period of
about 30 years Cold Spring Harbor was
an epicenter of efforts to understand
the impact of heredity and human disease
Charles Davenport it's its original
founder a notable and noted science who
was not a particularly wild-eyed
eugenicist published a textbook I think
in 1911 about heredity and human disease
that became the leading-
textbook of its of its era I actually
had read that textbook and there's
actually much in it that is correct
even from that century ago he had it
right and he had some things that were
wrong today we don't much think about
for example the genetics of criminality
but as recently as the 1970s there was a
huge debate in our society among both
people in criminal law and people in
genetics about the so-called X Y Y
chromosome having an extra Y chromosome
and whether that predisposed to
criminality and I think the final the
final rule on that is if you're born
with that syndrome you tend to sort of
physically develop a phenotype that is
much like Hollywood's image of a thug so
in fact what some researchers found that
people with XYY syndrome weren't
particularly awful criminals but they
were much more likely to be caught so
you know this gets very complicated very
quickly so Cold Spring Harbor was the
home of an institution called the
Eugenics Record Office there was a staff
here
there are many hard-working scientists
and and technicians sort of like how you
might think of a genetic counselor today
for those of you who know these terms
and they and others compiled these vast
pedigrees of families maybe hundreds or
even thousands of members for several
generations trying to elucidate without
the tools that the labs here have today
whether or not there was a genetic force
at work and what it might be and so that
was a setting that were there seemed to
be a scientific support for the notion
that there was a cause that the
phenotype be it epilepsy, criminality
whatever bipolar disorder there
might be an underlying gene and maybe we
can do something about it by limiting
birth
so the the story now enters a
legislative phase in in 1907 Indiana
became the first state in the Union to
enact a compulsory sterilization law it
was aimed at prisoners males and it made
the vasectomy a condition of parole the
notion is that their juror may be a good
idea by the way but it made the notion
that it adopted the notion that germ
plasm the sperm of the of the criminal
might transmit criminal tendencies in
the space of about 20 years more than
half of our states enacted similar laws
very few focused on prisoners most
focused on institutionally what we would
have called them mentally retarded
individuals or mentally ill and by fits
and starts during the period from 1910
to 1925 a various number of state
agencies employed such programs pursuant
to date state law and in most cases when
they were challenged these laws they
were upheld at the state level but it
never really went to the Supreme Court
until 1927 many of you have heard or
read in the newspapers about Buck v. Bell
which was the decision growing out of a
Virginia statute that by vote of 72 the
Supreme Court said that it was
permissible after appropriate review for
state authorities to without her consent
sterilize a young retarded woman that
decision opened up the golden era if you
will of
negative eugenic legislation and for a
period of about 18 years till about the
end of World War II some 60,000
Americans were sterilized without their
consent now you could imagine what a
report like this would how that would be
appear in the front page the New York
Times today but it wasn't as obvious as
one might have thought because these
were almost all institutionalized
individuals who were sort of in the
background of society but 60,000 is a
pretty a pretty large number and it was
actually growing during the 30s but at
the same time and I'm trying to weave
together scientific advance with social
attitudes here which is what you are all
interested in at the same time during
the 30s the reason for sterilizing
people changed and this is this calls on
the first of two themes they're actually
very relevant to the current election
processes going on immigration and the
treatment of women let me illustrate
this and I did deep archival work on
this for a book I wrote earlier in my
life and what the archival work shows
that until about 1927, 1910 to 1927 by a
factor of about five or six to one
the sterilizations were done on men now
there's a couple of very simple reasons
for that it's a lot easier sterilize a
man than a woman and it was
technologically challenging the cutting
of the fallopian tube is a form of
sterilization was only actually well
developed about 1938 before that it was
a total hysterectomy and there was a
significant death rate associated with
it much easier to cut the spermatic cord
but in the 30s as the technologies
improved and as the this is very
important that Cold Spring Harbor played a
very positive role in this regard as the
understanding emerged that this notion
of a single
gene cause of complex traits could not
be supported there was a shift an
intellectual shift away from sterilizing
women young women because they were at
risk for having children with severe-
severe problems two
sterilizing women because of their
underlying mental retardation or mental
illness they would be unfit to be
parents they couldn't take care of their
child not about directly about genetics
here and/or the burden of having
children would actually be too much for
them so the shift in intellectual
thinking which is really very apparent
if you go into the archives and state
institutions was a shift saying we're
sterilizing these women for their own
good a dramatic shift and one that was
politically at the time seemed very
acceptable again I've acknowledged that
the numbers were small since 60,000 is a
very small number compared to the
population it at all but I think that
the dramatic shift from six five six to
one men to women to five six to one women to men was
a very dramatic piece of information
suggesting a change in attitudes now one
of the interesting asides and this
challenges both institutions like Cold
Spring Harbor and this audience is if by
the 1930s we knew that a Mendelian
conception of complex traits like
criminality seizure disorders whatever
it might be some cases poverty if we
knew that couldn't be true why did the
programs continue for another ten years
and the most difficult problem I've had
in researching the history this has been
why didn't scientists in a more
organized way speak out to refute these
ongoing practices there certainly must
must have been a large cohort that
understood it would they were
scientifically flawed ideas and there
were a few well-known scientists who did
speak out but when you think about the
role that our leading scientists have
today in setting policy things like
the Asilomar conference
it's back in the 70s to worry about this
escape of recombinant organisms other
other commonly held conferences to try
and set policy you see no evidence of
that back in the 30s maybe the
institution of science just had to
mature a little further now a couple of
others the things I'd like to say to put
this in context for you has to do with
placing the eugenics movement in an
international context I've already told
you what eugenics is but let me say word
about movement how dare and on what
basis would I claim that this is a
movement
well I alluded to one thing already and
that is the vast number of bills
proposed in state legislatures that
doesn't happen you don't have hundreds
of bills proposed if there isn't much at
work in the land of thinking about this
for some of the research I did I forget
whether there's 1905 or 1906 but there
abouts I did a research on the index to
public periodicals all the topics and
you know the Atlantic Monthly, McMillen's
and eugenics came up as one on the top
three, three years in row there are
literally hundreds of popular press
articles published by so it was very
much it was in textbooks I have old
biology textbooks from high school there's
chapters on eugenics so the thinking was
broad and it wasn't just the United
States and it wasn't just Germany at
least 25 other countries besides those
two adopted this kind of legislation to
a greater or lesser extent now with the
horrors of the Holocaust and Nazi
Germany very rapidly the number of
institutionally based sterilizations the
United States dropped by about 1939
they're about four to five thousand
state-based sterilizations a year mostly
on women the United States by 1950 there
were probably 500 and then the number
petered off to almost nothing very
rapidly one there were no surgeons around
to sterilize they were all in the war, two we
learned about Nazi Germany and its
successes and by the way its successes
were profound we all think horribly
about the death camps and things like
that but after the enactment of the law
in Germany that created the so called
hereditary health courts a whole court
system developed in Germany to deal with
who should be sterilized 400,000 or more
court orders were issued in less than 10
years to sterilize people in Germany so
way way and for far more reasons for
example deafness was a reason to
sterilize so that was the ugly excess of
it and just one of many ugly accesses of
that era so that is a little bit in the
limited time I have to share with you
that's a little bit of about the
background over-optimistic science being
developed a hundred years ago in a
Progressive Era with the intention to do
good not to do harm and the movement of
that idea into I suppose I assume
well-meaning state legislators who said
this will be good for the people were
sterilizing
one among other things if one were
sterilized in some of these institutions
for the mentally retarded one could
leave the institution and I've read the
letter saying well Molly can't get
pregnant now she's wonderful she'd make
a very nice household mate and you could
say this was freeing these individuals I
once was in charge of the care of a
thousand patients in one of these
hospitals for many years and to take
them from the limitations of an
institution allow them in a kind home
where they would do work it may sound
may sound not quite right to you now but
it was a big improvement in their lives and
I think we all know we have to be
careful about judging history judging
the past with today's values
but the world began to change and
went in another direction so this is
part two of the talk and what I want you
to think about now is to me an even more
troubling story that is not connected
with Cold Spring Harbor in
anyway and that is the use of
sterilization to restrict family size in
the world at large and a sub part of
that is to look at and only do it for a
few minutes look at the role of
sterilization as a coercive weapon
against indigenous peoples so for
example you know that in 1973 China
adopted a one-child policy I think that
the Chinese one-child policy which is
just loosening now after 40 years may be
the largest single social experiment in
the history of humankind
in that literally untold millions of
babies that were expected were not
born there was emerged a very disturbing
and fairly well document trend to
terminate female fetuses because the
culture was going to have one child they
wanted a male fetus to the point where
now the largest single discrepancy
between a gender descriptions see
between women and men is in China and it
is so large that one wonders where one's
going to find a wife and whether this
will contribute to social unrest it's
numbers depending on who you read 20 or
30 million missing girls in India it's
the same story but it is it is not as
dramatic cuz although there was a short
time when Indira Gandhi embraced a
one-child family and sterilization it
still happens a lot in I can't give you
the details because of time but in the
in the literature in groups like Amnesty
International investigate this in the
literature one can find clear evidence
of what I would call involuntary but you
might only call in coercive efforts to
sterilize large numbers of Indian women
that are going on today they have what
are called sterilization camps these are
women who are living in poverty who
often have a number of children and for
roughly the equivalent of 10 dollars
which of course is a lot more valuable
there than it is today different regions
will pay women by the thousands to
undergo sterilizations it doesn't reach
a number that will really have a
dramatic effect on anything and what's
curious about it is it's not really
supported by any facts one can go to
regions of India that are quite wealthy
and find a fertility rate of between two
and two and a half just about like the
United States because the families have
money they can take care of their kids
etc, etc,  or you can go to the
state of Bihar in the south where the
fertility rate is about five or six
children and the women you could say
gladly but they are being paid and I
might add the number of 
vasectomies is about two percent of the
number of tubal ligations which raises
some again the theme about the treatment
of women probably the single most
important issue in bringing the world to
a better place in my opinion there is
also in in isolated areas Brazil Peru
good evidence of selective pregnancy
termination or sterilization of Native
Americans as part of an overall drive to
move people off of land and it's it's
not I wouldn't say it's large numbers
but that it exists today is I think
troubling to all of us now before I turn
to the future because I want to have
lots of time to talk with you I want to
say a word about the other theme I
mentioned that was relevant to to the
presidential race and that's immigration
I think it's fair to say that at least
for one half of the parties running for
president immigration is a major issue
there was a time and we of course our
nation of immigrants as you all know but
there was a time coincidental with the
eugenics era in the United States
actually 1907 the very year that Indiana
passed that sterilization law that I
mentioned was the apogee of immigrants
into the United States and in terms of
the percentage of immigrants coming into
the country
compared to the population as a whole
the amount of immigration coming into
the country today is trivial yet it
elicited a huge response and here Cold
Spring Harbor's genetic record office
did have a big influence not through the
institution itself but through a man
named Harry Hamilton Laughlin who
actually was the director of the
eugenics Record Office he in this
curious era of the tens and twenties of
the 19th century he emerged as the most
vocal support and most actually active
in the lobbyist Congress to change
immigration laws this led in 1922 I
believe it was it might have been 21 to
a major amendment of immigration policy
in the United States that basically
reset the quotas for who could enter the
country and this will be no surprise to you
sharply protecting immigration from
North Western Europe England, Scotland,
Spain and sharply restricting it from
Russia, Poland, southern Italy and Greece
this was on top of the very first
immigration laws great anybody here from
grew up in San Francisco, no?
the first immigration laws of the
United States were in 1877 they were the
Chinese Exclusion Acts here we're using
the Chinese to build our railroads and
wash our laundry but the first act
refused the Chinese man the right to
bring wives across which was and really
was designed to send them you know
circle men circling back to China and
from there we went forward but the law
astoundingly when you think about it law
that was enacted federal legislation in
1922 stayed on the books for 46 years
until 1968 that was when Congress
finally revised the immigration law to
have a more parity if you will man who
could enter the country I guess the
reason I'm sharing that with you is one
to reflect on the debate
today even if you accept the concerns of
one of the candidates has suggested it's
a trivial issue in terms of numbers
compare what it was in 1907 and we got
through that so hopefully we'll get
through this right so the thinking then
to summarize the thinking is no longer
about whether or not a woman is should
have a child because there's something
wrong with her genetic heritage the
thinking now is we just don't want to
have too many people that's a very
bigger that's a much bigger thought and
once again it's women internationally
who are bearing bearing the burden of
that I I hope that China that policy
where this changes is signaling a big big
message to the rest of the world but
India remains very engaged in this
arguing that it is that it is not course
if it's you know people are being
recompense for undergoing this so in the
last part of the talk and this is the
one where I really particularly would
like to engage you I want you to turn
back to the question that I posed at the
start which was a question about what
role society or an individual should
have in judging or influence the
reproductive freedom or activities of
other human beings and I want to and
it's probably the most important thing I
can tell you about today because the
past is the past and when I'm about to
raise our issues that are very relevant
to the future of your children and
grandchildren we have a new technology
emerging I think it is a certainty that
it will come to play I can't tell you
exactly when but bear with me because
this is the one technical part of my
talk so I have to explain it to you
prenatal diagnosis has been available in
the United States States since about 1973
as you know it began with a search in
older women of whether or not woman was
carrying a child with Down syndrome so
that was some 43 years ago
interestingly we have not budged an inch
the number of children born each each
year with Down syndrome
and it's because of demographic shifts
in the age at which people are having
children as more older women have
children
they're producing a larger cohort of
Down syndrome fetuses that offset some
of the technology that may change very
soon but the background has been a
growing use of prenatal diagnosis slowly
and steadily but but it's about I think
to change and even if I'm wrong on the
timing it makes for great discussion
with your friends and family a Holy
Grail in prenatal diagnosis has been the
ability to capture a fetal cell in the
woman's bloodstream that that means
non-invasively so we don't have to put a
needle into the womb so it's much safer
for the fetus it turns out that on the
order of one on a million cells
circulating in a woman's blood when
she's pregnant is a fetal cell it's not
free fetal DNA I'm talking about I'm
talking about an actual fetal cell that
contains the entire genome of the fetus
so the technology I mention they're two
technologies are really three that I'm
mentioning right now
one is the ability to identify and
capture that cell and take it out of the
mother's circulation that's not
perfected yet but I know any number of
labs and companies looking at this and
we can do it with a certain success rate
for variety of technical reasons we
would like to have about five fetal
cells to be analyzed so we don't make
one cell alone could be mistakes right
so we want to have about five I say
we're about a year away from confidently
doing that then you take the fetal cell
which contains the entire genome your
22,000 genes and you amplify it and there
are ways to do that that folks at Cold
Spring Harbor probably been involved
with and know much better than I do the
story of that but if you amplify it then
you can interrogate it and you can
instead of saying does my baby my fetus
have Down syndrome
what among a thousand different
disorders might my fetus have and you can
do it in an actionable manner in the
sense that this is doable in about ten
weeks of pregnancy so it's not late
that's the way it looks right now now we
could have spent the whole hour on this
but let me as you're thinking about what
this means let me make a few points
there are some unknown thousand of
antigenic disorders let's
call people say seven thousand let's
just say five thousand the vast majority
of those are so rare that they will
never attract a commercial effort if
only four to ten children a year are
being born with the disorder or twenty
or thirty no drug companies gonna I know
I'm in this business they're not going
to develop the drug it just won't
compute fiscally so that leaves open
about some thousand-plus disorders which
really the only technology is a
technology of avoidance with whole
genome amplification you can ask about
any rare monogenic disorders you want
and get an answer but that it's not that
simple because we don't have for a lot
of these disorders enough clinical data to
be able to predict the real outcome of
the fetus or the child I remember living
through this in the 80s or 90s when I
was counseling women who learned that
their fetus had spina bifida term
I think most of you know and I can still
remember both my own personal anguish
and the anguish or agony of the women
because let's just say I took ten women
and I said to each one of them your
fetus whatever age before week 20
certainly your fetus has spina bifida
low lesion in the spine now the woman
says back to me well what's going to
happen to my fetus and my honest answer
would have to be I don't know if you
just could have minor problems walk with
braces and go to Harvard your fetus
could have significant physical problems
and low normal intelligence or you could
have
devastating event with an infection and
wind up having a child died of meningitis
so the question I'm- or the reason is I'm telling
you that story is because I had the
information I even had the diagnosis I
even had the pictures but I couldn't
predict what was going to happen because
these things unfold amidst thousands of
other genes in the genome and it's the
background of the pregnancy what what
environment you grew up in so the
challenge for these amazing new
technologies will be able would be to
wait and measure the knowledge we're
sharing with the woman and her husband
that's a problem in what we call
computational biology you just have to
amass very large datasets and then be
able to give yourself some predictive
power of course it's still a woman's
decision a recent example of this that I
was involved with just to go on a
tangent for a second was that in the 90s
I was involved in developing and
preparing the so-called BRACA1 test
for breast cancer risk and the problem
we had I chaired the clinical advisory
board for the company in that time the
problem we had is we'd get samples from
women with a clear family history of
breast cancer or ovarian cancer they
were certainly based on history they
were real candidates whether or not they
had a risk and then we would study the
gene some 16,000 base pairs and we would
find mutations but we didn't have a
database to say how serious that
mutation was so 15% of those cases that
were sent to us we found a mutation of
unknown significance we couldn't call it
a disease mutation or not and it took
about three or four years of just
looking at this database over and over
again and amassing it just beyond say oh
that does predispose to ovarian cancer
or whatever might be so there's always
going to be this period where you have
you have a lot of information but you
don't have a lot of knowledge and that's
really when I share with you on the
other hand you haven't forgotten what
I've said the vast majority of severe
monogenic disorders in my opinion will
not
this century be dealt with by curative
therapy they will be dealt with by
avoidance I mean with all the talk about
the human genome project is doing great
good all these other things the FDA is
approving about three to four new drugs
for monogenic disorders a year I've just
said there are thousands of them it's
not going to change that much we may get
up to ten but and they're so rare we're
gonna figure another way about it so you
can ask what you would advise your
daughter's say they're in their first
pregnancy and they say mom dad my
obstetrician told me about this new test
it's just a blood test and they'll
give me this information then we'll sit
down and work with me to help understand
this what do you think I should do what
do you tell him what would you maybe
somebody has an idea here who can share
with us what you would tell them I mean
unfortunately we know that there will be
a lot of uncertainty for sure but is
that information first of all should
we even be allowed to offer
the test there's a question or should
there be some agust body that decides
when it's ready and it has to meet
certain if you will certain criteria for informativeness
thats one way to think about it
should we leave it in the free market, is that good or a bad idea I don't know what
is the overall impact on society of
embracing a test and I know not everyone
will take it but embracing the test that
presupposes that you are looking to
avoid the births of certain individuals
that ties it back to eugenics doesn't it
see so I'm in the closing minutes here
I'm arguing to you that the era of
supposedly evil governments in it's
certainly a case of Germany a definitely
evil government using technology against
people is almost certainly over but the
notion that the society in enlightened
society young couples will want to
engage information to plan their own
pregnancy saying look I'm gonna have two
children I want them to be healthy I
don't want to and I know I this is what
I do for a living I know so many
families I hear from a family every week
for sure some new event in their life
is a life-changing so where does this
kind of technology belong in our society
so that's the question I'm worried about
right now I just in closing here just a
few words about Cold Spring Harbor and
the eugenics Record Office the eugenics
record office which existed here
until 1939 and the archives of which are
now at the University of Minnesota I've
been there many times to look at them
was a period in which the activities in
the search for explanations for disease
was doing it the best it could in very
limited context we're in a similar now
where the information is much more
sophisticated but we have the same set
of problems what do we do with this
information and I'm so pleased to have
had the honor of talking with you
because it's not a decision to be made
by us the scientists or the physician
it's really a decision to be made by
enlightened individuals who are thinking
about the project after all that's the
definition of a good society so thank
you for listening and I hope I've
titillated you a bit and I hope we have
time for some questions Bruce.
