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a new test that reveals births
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abnormalities at a much earlier stage
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every new advance in prenatal screening
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diseases are being literally stopped in
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their tracks brings difficult questions
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red identifies the chromosome 21 what's
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normal abnormal where do you stop do you
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think that this could lead to a world
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without Down syndrome kids oh this is
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eugenics weeding out specific
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communities that we deem is
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fundamentally unfit 100 years ago
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eugenics was the law part of a plan to
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stop this so-called
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genetically inferior from having
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children tens of thousands of people
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were sterilized as a result of these
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laws we need to really understand how
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that happened and we shouldn't let it
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happen again
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[Music]
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[Applause]
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in many ways Rebecca and Patrick Coakley
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lived the American dream
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Jackson is 7 kya is 4 and the last
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addition is Kendrick
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it's never boring we have a great life I
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had the pleasure of growing up in a very
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strong community of little people I was
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literally born and raised into the
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disability rights movement Rebecca is
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the second generation of her family with
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achondroplasia the most common form of
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dwarfism and is an advocate for people
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with disabilities I was in the white
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house for two and a half years as
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President Obama's chief diversity
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officer it was an incredible experience
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in August of 2017 she published an
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editorial about genetic engineering and
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prenatal diagnosis so as the testing
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becomes more and more available obvious
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fear is that people will abort kids like
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that cute girl riding the scooter
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outside because of what they don't know
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that my children may end up being the
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last generation of people like them I
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think we can look back historically and
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it's scary
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what is the bearing of the laws of
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heredity upon human affairs eugenics
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provides the answer the idea that
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society would try to eliminate groups of
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people based on real or perceived
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disability is not far-fetched one of the
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terrible things about eugenics was that
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it basically declared certain people had
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lives that were not worth living in the
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early 1900's the American eugenics
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movement arose as a response to
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increased immigration and rapid social
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change New York City was now a restless
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and thriving metropolis people are
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moving from farms to cities and there's
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a lot of poverty and crime so a number
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of scientists became convinced that this
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was the result of hereditary
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feeble-mindedness
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and you could actually improve the human
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race by controlling their heredity it
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was completely wrong but it fit with
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long-standing prejudices that people had
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they would hand out awards at state
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fairs to families that represented the
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best in American society and encourage
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them to have kids on the flip side they
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started pushing for laws allowing States
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to sterilize people that they judged
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unfit eugenics programs were set up in
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more than 30 states they would draw
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these elaborate family trees and they
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would note whether these people had a
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normal intelligence and then say aha you
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see there are lots of people in this
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family who are feeble-minded forced
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sterilization was even approved by the
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Supreme Court in the 1927 case buck V
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Bell dramatized in the film against her
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will a buck from job bearing is out
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beauty in the late 1920s support for
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eugenics began to wane as new research
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undermined its basic ideas about
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heredity and then in World War two Nazis
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adopted American eugenics I see and they
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said well not only are we gonna
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sterilize people we're gonna kill them
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too so after World War two
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eugenics as a movement completely
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collapsed
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despite her fears Rebecca Coakley says
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reproductive choices must always be
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personal and that it's important to
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remember eugenics laws prevented people
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with disabilities from making these
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kinds of decisions for themselves as a
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woman who is very pro-choice and
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believes that that's a fundamental right
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it is hard to talk about the fact that
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people are going to abort kids like me
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that's why having conversations like
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this is so important to get out there to
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show people that we have a life worth
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living and a life with dignity genetic
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screening was not always so complicated
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when it began in the early 1970s it was
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seen as a nearly miraculous way to
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prevent horrible suffering it was really
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scary because we knew that there was
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something going on
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sherry and Jeff Unger Leiter's first
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child Evan had Tasek s-- a fatal genetic
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disease children like Evan appear normal
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at birth but soon deteriorate it's
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horrible his children go blind and deaf
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they can't move on their own they can't
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express what they're feeling on a good
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day he would have two dozen seizures
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there was nothing that we could do for
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Evan except keeping him happy out of
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pain not suffering there is nothing
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worse than knowing that your child is
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going to die before their fifth birthday
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chances of having a second child are
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greatest if they are of Jewish heritage
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tay-sachs is caused by a mutation in a
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single gene in 1971 a test was developed
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to identify tay-sachs carriers if both
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parents carried the gene there'd be a
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one in four chance that the fetus would
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have this disorder the Jewish population
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he said let's start a screening program
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a simple blood test provides a way to
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prevent this tragedy at a sac testing
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will be held in your community soon ad
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synagogues
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Jewish community centers they just set
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up tables drew blood identified the
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character after Evan sherry and Jeff
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Ungerleider terminated one tay-sachs
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pregnancy and had three healthy children
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sherry is now a speaker and advocate for
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screening
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I believe knowledge is power I loved
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Evan more than anything he's my first
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child but if there's any way I could
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have spared him I would have run Wapner
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is a geneticist and obstetrician who has
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been practicing since the 1970s you can
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identify he watched tay-sachs become the
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model for a whole new kind of preventive
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medicine what was radical was that the
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community decided to do something about
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a genetic disease that was in their
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population they almost wiped out the
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disease and nowadays succeeding lis rare
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to see a child with tay-sachs disease
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but now some 40 years later he says
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advances in technology what we're doing
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is sequencing amniotic fluid samples
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have made it easy to screen potential
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carriers fetuses and even embryos for
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hundreds of genetic conditions everyone
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agrees that if it's a severe and
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profound disorder we should screen for
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it well the discussion that we need to
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have is where's our technology taking us
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a new option a simple blood test the
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newest test called cell free DNA is so
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easy it's routinely advertised to
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pregnant women it's actually the most
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widely adopted genetic test that I've
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seen genetics researcher Wendy Chung has
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seen screening spare families from
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horrible suffering but its rapid
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expansion has her wondering
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set up for me for a second I've got a
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lot of patients that have many of the
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genetic disorders that we could identify
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through the cell-free DNA needs to is
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knowing that I had Turner syndrome girls
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with Turner syndrome some of them will
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have structural differences in the way
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their heart is formed and differences
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and the way their ovaries work you eat a
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lot of chips I'm sort of addicted to
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them they're perfectly healthy who's to
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say that that's a disease it's a
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difference sure is it something that you
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can still be happy well-adjusted
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productive member of our community of
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course by five when it began screening
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was only for those with known risk now
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dr. Cheung worries about offering more
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tests to more people without first
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educating them about what the results
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really mean and what various conditions
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entail the concern is they buy into that
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idea that they need to do as much as
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they can to ensure a healthy child when
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there's a genetic problem with their
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fetus the knee-jerk reaction is it
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started with tay-sachs so it must be the
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same and so automatically they start
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thinking about ending that pregnancy
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because if it weren't bad why would you
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have tested me for this in the first
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place as we consider our options as
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individuals and as a society there is
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also the shadow of history no matter
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what we do the one line we should never
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cross is this always has to be voluntary
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it should never be a mandate that you
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have to have genetic screening or
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testing we have to be incredibly on our
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guard that we're not simply looking at
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people and saying I've decided your life
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is not worth living
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this has happened before and as our
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science gets more powerful we shouldn't
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let it happen again
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you
