The Burden of Knowledge
This provocative documentary explores the difficult ethical issues arising from advances in biotechnology that make it possible to identify genetic defects during pregnancy.
Featuring interviews with seven couples who were offered prenatal testing, along with healthcare and genetic specialists and people with disabilities, this video raises important questions about personal responsibility and the changing roles of science, medicine, and technology.
'Extremely evenhanded, giving everyone something to ponder, this involving and disquieting documentary is great fodder for discussion of medical ethics and health issues.' Irene Wood, Booklist
'Addresses these ethical dilemmas with sensitivity and compassion, objectivity and good science. Particularly appropriate for sharing with parents, it is must viewing for all professionals who care for children and families.' M. Harry Jennison, MD, Former Director, American Academy of Pediatrics
Conquest, Wendy (filmmaker)
Drake, Bob (filmmaker)
Elliott, Deni (filmmaker)
Music, Charles Conquest.
Distributor subjectsDisabilities; Ethical Dilemmas; Genetics; Healthcare; Healthcare History and Policy
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It was a hunger.
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It was like a wave of desire that
came over me to have a child.
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And… And it’s still the
strongest hunger in my life.
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It just seemed like life was going pretty well at that time. You know,
I working in the mornings, coming home and taking care of my baby,
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and hearing pregnant again and so it was
exciting. Yeah, it was really exciting.
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When you carry a child, you’re always… until
that child is actually born into the world,
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there is some… you know, some
thought that there could be
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something that goes wrong.
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No one can guarantee you, you know,
that you’ll have a prefect baby.
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And umm… so that when we embark on pregnancy, we
embark on a journey that has some unknowns in it.
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There is a
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natural part of pregnancy for every woman
that is this lonely part of pregnancy
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umm… where she is
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umm… connected with this child and so
worried that this child will be okay.
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And nobody can give her that reassurance. So it’s a
very lonely part. Umm… So she will naturally look
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to anything for reassurance. Where it
comes from? I don’t… I don’t know?
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I guess, because we all know that
sometimes babies aren’t normal, you know.
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I mean, that’s… that’s the fact.
Sometimes they’re not normal.
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It’s one of those instances
that you’ll never ever forget.
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You know, you get a call at the office
and… and the obstetrician says, umm…
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you better come to the hospital, we have a problem,
you’re son is mongoloid. End of discussion.
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The medical system doesn’t have a clue about the
true nature of disability. The medical system
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sees disability as a challenge
to cure, to fix, to alleviate.
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There’s a whole prenatal care package now
and a numerous tests that are available.
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And women and their partners are confronted during pregnancy now
with the decision of whether or not to have one of these tests.
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People have been sued for not… for hiding
this sort of information from somebody
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who then turns up a baby with a birth defect
and goes to an attorney. There is a tremendous
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industry behind prenatal
screening and prenatal testing.
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It’s an even more powerful
force, I think, than the sort of
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medical model piece that drives it.
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All the reflexes that a woman normally has early in pregnancy
are… are changed by the existence of prenatal testing.
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For all of time,
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women have had pregnancies and
deliver children mostly healthy.
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But 3 to 4% of all babies born
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on average are born with a major birth defect,
mental retardation or a genetic condition.
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Society has virtually no way
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and medicine has no means of achieving
better babies. For prenatal diagnosis,
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and the aspect, the genetic aspects of prenatal
diagnosis strive to do is to try and prevent
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major catastrophes or disasters,
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ah… in the sense of giving somebody
ample notice. Prenatal testing could be
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a source of information about a
child for the purposes of treatment
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during the pregnancy if that treatment were
available for the purpose of preparing families for
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ah… the challenges that they may face. Another
reason, I think, that has some legitimacy
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is that knowing that their baby is
free of a certain disease state
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or is healthy as far as we can tell them their
baby is healthy, has some real positive effects
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on their pregnancies.
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Every woman in the United
States is offered an AFP test
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when she is pregnant. It may be helpful to start
calling in a maternal serum screening test,
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because we’ve gone beyond AFP now.
It’s offered some time
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between the 15th and the 17th
week or 18th week of pregnancy.
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It is a true screening test.
One uses screening test
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because they are relatively
cheap and relatively safe.
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And you don’t have a diagnostic
test that is either one,
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that is either real cheap or real
safe or both. The whole purpose of
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the screening is to recognize
or distinguish women
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whose risks appear to be
higher than background.
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To tell them their risks are higher and to offer
them additional tests. Because it’s a screening test
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it will not tell anything specific
about that developing fetus,
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it can only indicate which woman may or may not have a higher
chance of having a baby with some sort of a health problem.
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All we do is take a blood sample from the
woman, we look in the serum component
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of that sample. And we will
give back to the… to the…
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to a patient’s physician, a result that says that fetus
is at risk either for an open neural tube defect
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or for a chromosomal defect such as
Down syndrome. Open neural tube defects
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are things like Spina bifida is
the major one, Anencephaly –
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which is complete lack of… of the
brain being formed in the fetus.
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Those are very serious birth defects.
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is having a particular faces,
being mentally retarded,
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having particular palmar creases,
having a particular blood profile.
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It is an entire syndrome of symptoms,
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and the genetic cause of which we know
to be having an extra Chromosome 21.
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A diagnostic test is something more or like amniocentesis,
which can tell with a… a great degree of certainty
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the genetic status of the developing baby.
Yes, well, amniocentesis is the procedure
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where a needle is introduced
through the abdominal skin
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into the… into the womb so that
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amniotic fluid can be extracted. The cells
will be analyzed for… for Down syndrome.
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That’s an easy diagnosis
for a standard karyotyping
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laboratory to make, and can be
made within a week, ten days,
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certainly two weeks from the time that you
had your procedure to getting results.
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That’s a definitive,
normal, abnormal result.
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So I felt like, \"With it available,
should we do it? Will I feel bad
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if god forbid something is wrong with the baby?\" And
I had the option of testing and chose not to do it.
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I don’t know. It didn’t present any problems. It
wasn’t invasive. You know, it’s a simple blood test.
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Hey, wait a minute! This is not just a
blood test. If it comes back normal,
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it’s just a blood test. If it comes
back abnormal, it’s… you know,
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it can be quite a bit more. I guess, I was not
aware that there was that testing and that ah…
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I guess, I felt like, you know, some means
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that doing that was encouraging
people to test and then abort.
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And ah… I have a very strong
feeling against abortion.
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I think at minimum you have to understand that
what you’re doing here is not some reassuring that
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\"we want to make sure your baby is all right testing\",
but you’re entering into a screening program to decide
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which people you think ought
to be brought into the world
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and which not, and what kind of a child you’re
prepared to mother with the understanding
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that you could make a careful rational decision that there’s
a particular kind of child you are not prepared to mother
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and the world may very well hand you that kind
of child anyway in spite of all the testing
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that there ever is. I was supposed to
leave for Europe on Friday for business.
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And I was out with my whole office
celebrating what a good year we were having.
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And I got pulled away from
the table by my secretary
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who said you’ve got a message to
call your doctor immediately.
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And I had my suitcases. I was on my way to the airport
from this restaurant. And my doctor said to me,
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your test results came back and the
F&P levels are low. You are now a one
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in 71% chance of having a
baby with Down’s. And it all…
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It hit me like someone had just knocked
me out. It was one of the worst feelings
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I’ve ever had. And I just… I felt like my world
was… was falling apart. And my doctor kept
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saying to me over the phone,
this doesn’t mean anything.
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It is a screening device. Understand all
you’ve done is your statists have changed.
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Probability thinking in that
sense seems alien to people,
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ah… at least when you talk
about it in… in the terms of…
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of those words or the numbers
that go along with it and yet
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making judgments on probabilities
is something all of us do everyday
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many, many times a day. And I said, well, you
just told me I went from one in 2,000 to one
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in 71 and then I should not be
overly concerned about that.
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I said, may be you’re not overly concerned but I
am. This is something that’s living inside of me.
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If we didn’t have the technology it wouldn’t even
be an issue. You’ve… You’ve created that anxiety by
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offering the test. You
know, we’re obligated
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to offer this screening test so we
offer this test. So we… In some ways
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I feel like we’ve created the anxiety.
Furthermore, if the results
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of the maternal serum screening
testing are reassuring,
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that certainly does not reassure
anybody about the absence
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of any other birth defect or malformation.
It’s not that everything is fine.
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That baby does not have those conditions for which you’ve
been looking. That’s it. You cannot say any more about that.
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Your only choice if you want further diagnostic
information is to have an amniocentesis.
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Peoples choices about genetic testing
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can’t be predicted. You can’t
walk into an exam room
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and look at a couple and think, well, based on
their, you know, education or their religion
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or their income, I can make a reasonable
prediction of what they will pick.
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It starts out by something completely
different, that’s what I call their world view.
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Well, there is no question about the
fact ah… that a little knowledge is best
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and the more knowledge… you know, the more knowledge you… you
have the better off you are. Yeah, I think… I think the more
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definite knowledge you have,
you know, the better equipped
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you are to make a decision, I mean,
in… in any instance. I feel like
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the knowledge is difficult no matter what it’s easier
with a baby there to love and hold and care about.
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There is all sorts of
misinformation disguising under
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the name of knowledge and… and the chance
particularly for a non-scientist to feel that
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she is getting the right information
is very, very difficult. It’s a very
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ambiguous kind of information the woman gets. You
know, I… I see a tall dark stranger in your future,
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but ah… they can’t really tell the woman
the information that she would need
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to make the kind of choice that she would be comfortable
with. I don’t think we need more information. I think that
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we’ve got more than we need. And most of it
is based on fear. If… If all this technology
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came about because we wanted
to save lives in a loving,
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healthy, happy way, I’ll be all for
it, and sometimes it does that.
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But I really believe it’s fear-based. And I
believe the more you involve yourself with that,
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you’re giving yourself over to a philosophy
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that I don’t buy. You know, man is
wrestling for control with God and I…
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I think scientifically we’ve reached a point
of technology where we’re into some areas
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where we actually are
beginning to gain some turf.
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And I… I’m not sure that’s right, you
know, because we don’t… we don’t have…
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we don’t have the more… I think our society
no longer has the maturity morally
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and spiritually to deal with those things.
And I almost wonder if we did,
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we wouldn’t, because we’d realize that’s
God’s territory. Let him have it.
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I would be insulted if they did not give
us the opportunity to have this test,
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because they’re just saying,
you know, we’re… we’re ah…
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we’ll do… we’ll do that’s best for you. You
know, we won’t… And… And in the meantime,
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we’ll also make you follow along with what we think is
morally right. What I’m not willing to do is to say
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that everybody has to have that knowledge,
that that’s necessary for us to… to… ah…
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to help you have a baby, because I don’t think it
is for a lot of people. I think it’s unhelpful.
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I think that along with
the right to know ah…
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is the right not to know. And I think that… that
patients, mothers, parents are very much entitled
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to ah… take that perspective.
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Pregnancy is a developmental
event, it’s a life event.
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And any ah… developmental
life event carries
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with a decision making. Many
people come to pregnancy
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not having well-honed
decision making skills.
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So what we try to do is get a perspective on how
they… how would this information means to them.
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We also want to at least attempt to
have them integrate the information
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so that their decision process can be articulated
for them and also that they feel comfortable
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going ahead with testing or not testing.
So a lot of what we end up doing is
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first of all getting the couples talk to each
other. Sometimes they have not addressed
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what they would consider doing if they found
that their fetus had some type of problem.
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So, we often engage them in that kind
of discussion. From the very beginning
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I was never sure what I would do if I ever
found out the baby had an abnormality.
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Ah… I just never really thought about it.
I… I thought, I’ll cross that bridge
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when I come to it. It probably isn’t going to happen. And
I remember going in the hospital and going downstairs
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to this office, and fairly young woman,
who brought out, and to this day this…
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for some reason these little
pictures of the genes
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give me the creeps. Somehow to see a human
being like that, I don’t… it was very creepy.
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Pregnancy is a really lousy time to give people
information about their genetic risk for anything.
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Some couples choose to go ahead with amniocentesis, some
do not. But the whole process of genetic counseling
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and our basic tenet is non-directive
counseling. Being non-directive,
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I think, umm… involves having
implicit faith in a couple’s ability
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to make the decision that’s right for them.
And that your perspective
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as the counselor umm…
is somewhat irrelevant,
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because you can’t possibly put
yourself in that person’s shoes.
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So, from about 1976,
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it became accepted. Since the
safety of amniocentesis was then
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definitively shown to routinely
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and systematically tell women
who are 35 years or more
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that their risks were increased for
having a child with a chromosome defect
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and that amniocentesis was recommended.
So like to me there should be an option
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that every woman should be able to have not just
because she’s older, because you never know
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what’s… you know, what’s going on inside your body.
Just because you’re young it don’t mean that it’s…
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it’s 100% guaranteed that nothing is going
wrong. And I tell you I was harassed by people.
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There wasn’t a person it seems that I met that
didn’t say did you have amniocentesis? Like did you…
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eat your (inaudible) today, you know.
Like it was just automatic.
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I know about it. I had heard of people that
had had the test. And I thought, well,
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what harm can a prenatal test do if it can
give you some very valuable information?
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I really did hard information. I found
out at that point that the risk of
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amnio complication was
exactly the same as the risk
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of a Down syndrome baby. Approximately
one in 200 women miscarry as a result
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of the amniocentesis procedure. That’s, of course, not an
accident that those numbers are very close to one another,
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one in a couple hundred to one in a couple
hundred. That they’re about the same
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is not an accident. At which point
it became a very dramatic decision.
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Did I want the risk of
another amnio complication
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which had been enormously complicated
or the risk of a… of a Down’s baby?
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Pregnancy is a terrible time to have to…
to begin to learn about disability.
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Umm… And unfortunately that’s how
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many women are having to learn for the first
time about their own values and attitudes
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about the possibility of having a child
with a disability. She started to explain
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this chrom… one extra chromosome
causes Down syndrome, and at your age
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and you should be tested. And if we find out
you have a child with Down syndrome or,
00:18:25.000 --> 00:18:29.999
you know, the… the test is positive
then you can have an abortion so that,
00:18:30.000 --> 00:18:34.999
you know, with no extra money and you’ll be
treated just like a regular patient and you’ll…
00:18:35.000 --> 00:18:39.999
And she went on and on and on what they would do for me if
I had, you know, with the assumption I have an abortion.
00:18:40.000 --> 00:18:44.999
This was counseling. And I
said, \"What if I decided
00:18:45.000 --> 00:18:49.999
I didn’t want to have an abortion?\" If one chooses
not to have a prenatal test there are a whole range
00:18:50.000 --> 00:18:54.999
of things that occur. I think that will make them feel very pure
about that decision but there are going to be a lot of outside
00:18:55.000 --> 00:18:59.999
ah… influences on her that may
tamper her feelings of joy.
00:19:00.000 --> 00:19:04.999
Ah… There may be umm…
friends or parents who say,
00:19:05.000 --> 00:19:09.999
how can you possibly not have that test?
Or if a child is born with a disability,
00:19:10.000 --> 00:19:14.999
who… blame the disability or the challenge on the
mother, you’ve brought a child into the world
00:19:15.000 --> 00:19:19.999
who is… has a disability. How could
you’ve done that? And she said,
00:19:20.000 --> 00:19:24.999
\"How would you like to have Down
syndrome?\" And it was like,
00:19:25.000 --> 00:19:29.999
okay, it was like just the idea of it.
Now I wish I’d said, \"Well,
00:19:30.000 --> 00:19:34.999
how do you know how it feels to have Down syndrome?
And have you ever met anyone with Down syndrome?\"
00:19:35.000 --> 00:19:39.999
You know I hadn’t, but it didn’t seem like the horrible
thing they were in the world to me. I would have liked
00:19:40.000 --> 00:19:44.999
to have been the kind of person who could
have welcomed a Down syndrome baby.
00:19:45.000 --> 00:19:49.999
The reality of what I’ve
seen of what kind of care
00:19:50.000 --> 00:19:54.999
that entails puts a terrible
burden on marriages
00:19:55.000 --> 00:19:59.999
and on older siblings. And I think
people feel so guilty about that
00:20:00.000 --> 00:20:04.999
that they’re not always willing to talk about
it. The fact that people might make choices
00:20:05.000 --> 00:20:09.999
about averting the birth or
avoiding the birth of a child
00:20:10.000 --> 00:20:14.999
who could be predicted to have these defects
should not, and in my view does not,
00:20:15.000 --> 00:20:19.999
in any way prejudice an
individual’s view and sensitivity
00:20:20.000 --> 00:20:24.999
of the handicapped. When I was going
in for my second amniocentesis
00:20:25.000 --> 00:20:29.999
and I was just terrified. I happened to,
in the waiting room of the hospital,
00:20:30.000 --> 00:20:34.999
meet an older woman whom I love very much,
she’s in her late 70s and so a way these woman
00:20:35.000 --> 00:20:39.999
who has lived very well and very fully.
And she always seems to arrive
00:20:40.000 --> 00:20:44.999
at the moment that I most need her. And I was
going into the room, and I was really scared,
00:20:45.000 --> 00:20:49.999
and I was crying. And she
said… she put me in her…
00:20:50.000 --> 00:20:54.999
took me in her arms and she looked at me and
she said, \"You must do it. You must always act
00:20:55.000 --> 00:20:59.999
in favor of less rather than greater
suffering.\" Amnio is very expensive.
00:21:00.000 --> 00:21:04.999
It’s, you know, about a $1,000 a test.
00:21:05.000 --> 00:21:09.999
The ultrasounds are expensive
and just the prenatal care,
00:21:10.000 --> 00:21:14.999
you know. That… That’s difficult for a family
that can’t… that doesn’t have health insurance,
00:21:15.000 --> 00:21:19.999
I can’t afford it or whatever. I think women are
afraid of the test. I think the fact that they are
00:21:20.000 --> 00:21:24.999
inserting a needle into your pregnant
stomach kind of turns people off.
00:21:25.000 --> 00:21:29.999
I think worse was waiting for the results.
00:21:30.000 --> 00:21:34.999
And then I had three weeks
to wait for those results.
00:21:35.000 --> 00:21:39.999
Well in that time, there
was my time to deal with,
00:21:40.000 --> 00:21:44.999
what I felt was, the realization that I had something
wrong with my child, and how I was going to handle that,
00:21:45.000 --> 00:21:49.999
and how I would handle terminating the
pregnancy. You know, I… that’s what I did
00:21:50.000 --> 00:21:54.999
over that three-week period was deal with
the outcome. And I never really thought
00:21:55.000 --> 00:21:59.999
much about what if this child was okay. I spent three
weeks thinking about if this child is not okay
00:22:00.000 --> 00:22:04.999
I will have to terminate this pregnancy and I will
have to live with that. Waiting for the results
00:22:05.000 --> 00:22:09.999
puts the woman in a funny kind of social
position in which she is pregnant
00:22:10.000 --> 00:22:14.999
but not necessarily having a baby.
Ah… A woman in a pregnancy
00:22:15.000 --> 00:22:19.999
that she’s accepted or chosen, umm…
but who may not be having a baby,
00:22:20.000 --> 00:22:24.999
umm… the expression that I
found coming to me around
00:22:25.000 --> 00:22:29.999
this was the notion of a tentative pregnancy. The
woman is pregnant but not necessarily having a baby,
00:22:30.000 --> 00:22:34.999
she may be having an abortion.
When do couples make a…
00:22:35.000 --> 00:22:39.999
or a woman who is pregnant make a
commitment to being a parent of this child?
00:22:40.000 --> 00:22:44.999
Does that happen at conception? Does that happen when
the results of the prenatal tests are available?
00:22:45.000 --> 00:22:49.999
Does it happen when viability
of the fetus occurs?
00:22:50.000 --> 00:22:54.999
What is the point in pregnancy when… when
parents are unconditionally committed
00:22:55.000 --> 00:22:59.999
to… to ah… this child? And I
think that the problem with…
00:23:00.000 --> 00:23:04.999
with the option of terminating a
pregnancy on the basis of a disability
00:23:05.000 --> 00:23:09.999
is that it postpones that commitment. I was panicking. I
was saying to John, I’m going to feel this baby move.
00:23:10.000 --> 00:23:14.999
And when I feel this baby
move everything changes. Ah…
00:23:15.000 --> 00:23:19.999
And that was a big problem for me, the… the
idea of that I would start feeling life.
00:23:20.000 --> 00:23:24.999
Mothers will find themselves
momentarily more anxious
00:23:25.000 --> 00:23:29.999
awaiting the results of
the amniocentesis test.
00:23:30.000 --> 00:23:34.999
Ninety-six percent at least are
going to be reassured not only
00:23:35.000 --> 00:23:39.999
ah… that the results is normal but
their risks now are even lower
00:23:40.000 --> 00:23:44.999
than they would ever have possibly be,
and they have the reassurance that
00:23:45.000 --> 00:23:49.999
serious disorders have been excluded.
So, yes, there may
00:23:50.000 --> 00:23:54.999
well be some anxieties, but
when ultimately one compares
00:23:55.000 --> 00:23:59.999
these minor anxieties to the
literal chaos of a lifetime
00:24:00.000 --> 00:24:04.999
that results from the absence of such
testing or the opportunity of such testing
00:24:05.000 --> 00:24:09.999
and life for the child with serious handicap
thereafter, there are no comparisons
00:24:10.000 --> 00:24:14.999
whether you admit it. One of the
things that troubles me is that
00:24:15.000 --> 00:24:19.999
the phrase that medical
people have hooked on to
00:24:20.000 --> 00:24:24.999
for defining women’s experiences
with this testing is anxiety.
00:24:25.000 --> 00:24:29.999
That’s the word you use for a math test. Ah… It’s
a trivializing expression. When you talk about
00:24:30.000 --> 00:24:34.999
Supreme Court judges or effaces or
whatever making decisions about
00:24:35.000 --> 00:24:39.999
abortion and the meaning of life and obligations
of individuals to other individuals etcetera,
00:24:40.000 --> 00:24:44.999
these are the great moral issues of our time.
When women are wrestling with the same decisions
00:24:45.000 --> 00:24:49.999
in a very personal and immediate way with…
with… within their own bellies and bodies,
00:24:50.000 --> 00:24:54.999
what they’re experiencing is anxiety.
So, part of it is just trivializes
00:24:55.000 --> 00:24:59.999
the experience women have in relationship
to the test. It was very difficult for me,
00:25:00.000 --> 00:25:04.999
because here I was knowing that I would terminate
the pregnancy if… if the baby was Down’s.
00:25:05.000 --> 00:25:09.999
And I was working with someone who had a Down’s.
I then… And I felt that I was making a statement
00:25:10.000 --> 00:25:14.999
on his life and on his child. I was upset with my
feelings. I would say may be I’m not a good person
00:25:15.000 --> 00:25:19.999
because I won’t keep this baby. And…
And out of the kindness it was hard.
00:25:20.000 --> 00:25:24.999
He wanted to invite us over to get to know how
wonderful his daughter was and… Doing this.
00:25:25.000 --> 00:25:29.999
And… And it was very difficult. One of my biggest
fear was I was going to get this phone call
00:25:30.000 --> 00:25:34.999
and I knew I was going to get. And was
going to be all by myself with my babies
00:25:35.000 --> 00:25:39.999
and I was going to have to hear this news all by myself.
And I kept threading it. So I was all excited about it
00:25:40.000 --> 00:25:44.999
until they called me with the results.
00:25:45.000 --> 00:25:49.999
Tim walked back in the
house and I was sitting
00:25:50.000 --> 00:25:54.999
down tying my sneakers
looking at Sesame Street.
00:25:55.000 --> 00:25:59.999
And they had a group of kids throwing
a ball. And they… As I looked up,
00:26:00.000 --> 00:26:04.999
they focused on this one little girl with Down
syndrome. And I can remember looking at her thinking,
00:26:05.000 --> 00:26:09.999
she’s really… she looks great. That would
be fine. I wouldn’t mind that at all.
00:26:10.000 --> 00:26:14.999
I can remember that clearly thinking that. And I finished tying
my sneakers, and I stood up, and you walked in the door,
00:26:15.000 --> 00:26:19.999
and the phone rang, and it was the doctor. The minute I
picked up the phone, she didn’t even say anything else
00:26:20.000 --> 00:26:24.999
except I have great news for you. And
so immediately I felt good. I mean,
00:26:25.000 --> 00:26:29.999
I remember I broke down in my office the… the
minute she told me. And then I felt really great.
00:26:30.000 --> 00:26:34.999
You know, it’s like everything that I was doing was worth
it and he was going to be fine. You know, I… I can remember
00:26:35.000 --> 00:26:39.999
when I got the phone call thinking, you know, things like
this don’t happen to me that happens to other people.
00:26:40.000 --> 00:26:44.999
And then you through, why me? You know, I’ve
been a pretty good person my whole life.
00:26:45.000 --> 00:26:49.999
Why is this happening to me? And then, of course,
you’re faced with what are we going to do?
00:26:50.000 --> 00:26:54.999
How are we going to encounter this conflict
that we suddenly have presented to us?
00:26:55.000 --> 00:26:59.999
They said we have a terrible news for you.
Umm… Your… Your results came back.
00:27:00.000 --> 00:27:04.999
Umm… But they didn’t come back positive,
they came back with the child,
00:27:05.000 --> 00:27:09.999
you have Down syndrome. And I said, \"Does
that mean definite?\" And he said, \"Yes!\"
00:27:10.000 --> 00:27:14.999
And then I can remember
umm… not saying anything.
00:27:15.000 --> 00:27:19.999
I can remember him saying, \"Are you still there? Are you okay?\"
I think he asked me if I was alone before he told me the news.
00:27:20.000 --> 00:27:24.999
And then you were saying, what’s the matter? I started
telling you. And then you talked to the doctor.
00:27:25.000 --> 00:27:29.999
And then I can remember
umm… I can remember Colin,
00:27:30.000 --> 00:27:34.999
who was not yet two saying, \"Mummy is
crying. Mummy, mummy what’s the matter?\"
00:27:35.000 --> 00:27:39.999
He says, it’s… it’s not… don’t
blame yourself. It’s not something
00:27:40.000 --> 00:27:44.999
that you could have done yourself by
yourself. And I asked him to redo the amnio,
00:27:45.000 --> 00:27:49.999
because I just felt, what if somebody made a mistake? You know,
here I’m… I’m possibly going to terminate this pregnancy
00:27:50.000 --> 00:27:54.999
and… and the baby could be perfectly normal. I
was just afraid of some kind of human error
00:27:55.000 --> 00:27:59.999
or some kind of what…
whatever they do something
00:28:00.000 --> 00:28:04.999
went bad or whatever. So I asked him to repeat
the test, which he was very agreeable to do.
00:28:05.000 --> 00:28:09.999
So he said it’s… you know,
it’s up to you whether,
00:28:10.000 --> 00:28:14.999
you know, you have to decide whether you want
to continue with the pregnancy or terminate.
00:28:15.000 --> 00:28:19.999
So that was a… that was a heavy
weight, you know, in my shoulder.
00:28:20.000 --> 00:28:24.999
Then I had to think about it. I think he should have said
to us you can continue the pregnancy and keep the baby,
00:28:25.000 --> 00:28:29.999
you can terminate the pregnancy or
you can keep the baby, have the baby
00:28:30.000 --> 00:28:34.999
and give the baby up for adoption. I did not know at the
time, and I think probably most people out there don’t know,
00:28:35.000 --> 00:28:39.999
there was a waiting list to adopt babies with Down
syndrome. I called my parents and I remember saying
00:28:40.000 --> 00:28:44.999
to my father saying, you know, tell mom,
00:28:45.000 --> 00:28:49.999
I told him. And I said, tell mom we’re
having this baby and I don’t want her to…
00:28:50.000 --> 00:28:54.999
I don’t want to hear anything else about anything or
having this baby. We wanted to now make sure that
00:28:55.000 --> 00:28:59.999
we had uncovered every stone about Down
syndrome so that we could make a decision that…
00:29:00.000 --> 00:29:04.999
that I mean, if we had decided to terminate then we could
say we terminated because… and we would have a… a…
00:29:05.000 --> 00:29:09.999
a valid accurate list of reasons why we terminated.
If we said we’re going to keep this baby,
00:29:10.000 --> 00:29:14.999
we’re going to have this baby because there would
have been that, you know, that same list of…
00:29:15.000 --> 00:29:19.999
of accurate, valid, up-to-date. You know, we
found a lot of outdated information up there…
00:29:20.000 --> 00:29:24.999
out there. They had a few books on Down syndrome, but they
were all glorified books. You know, to me they were glorified.
00:29:25.000 --> 00:29:29.999
They… They always show… They
were showing all the positive,
00:29:30.000 --> 00:29:34.999
a cute little child, umm… one that’s
umm… you can tell that that child
00:29:35.000 --> 00:29:39.999
wasn’t slow in learning. Umm… You
know, it was always the better side.
00:29:40.000 --> 00:29:44.999
It was never the other which,
to me, they should have both,
00:29:45.000 --> 00:29:49.999
because there was the decision that you had to make
yourself, you know. They told us we could terminate,
00:29:50.000 --> 00:29:54.999
you know, 20-22 weeks, would be stretching it.
So we approximately had two to three weeks
00:29:55.000 --> 00:29:59.999
to make the decision.
00:30:00.000 --> 00:30:04.999
Nobody really wants to talk about abortion
with a pregnant woman who’s leaving booties.
00:30:05.000 --> 00:30:09.999
And for a lot of reasons nobody wants to talk about what
this test is really about, these tests are really about.
00:30:10.000 --> 00:30:14.999
There’s almost nothing that they’re testing
for that they can do anything about
00:30:15.000 --> 00:30:19.999
umm… except than the pregnancy. One of the
essential components of genetic counseling
00:30:20.000 --> 00:30:24.999
is the ah… opportunity to provide
a pregnant woman with choice,
00:30:25.000 --> 00:30:29.999
ah… the choice of… of not continuing
00:30:30.000 --> 00:30:34.999
a pregnancy ah… that’s at
risk ah… by ah… termination
00:30:35.000 --> 00:30:39.999
or ah… and a termination
which then would enable
00:30:40.000 --> 00:30:44.999
this woman to go on and have
a… a subsequent pregnancy
00:30:45.000 --> 00:30:49.999
which would hopefully result in a fetus
which would not have a… a problem.
00:30:50.000 --> 00:30:54.999
And I think this is ah…
00:30:55.000 --> 00:30:59.999
absolutely integral to the whole field
of medical genetics. I think without
00:31:00.000 --> 00:31:04.999
the option of selective abortion
relatively easy and relatively inexpensive
00:31:05.000 --> 00:31:09.999
that you would not see the
activity in prenatal diagnosis
00:31:10.000 --> 00:31:14.999
that you see, you’d see it as a much more
slowly developing field. Any woman who’s ever
00:31:15.000 --> 00:31:19.999
felt herself possibly pregnant when she
didn’t want to be, who’s ever had this,
00:31:20.000 --> 00:31:24.999
oh please make this go away, make this not
happen, knows that an abortion to get unpregnant
00:31:25.000 --> 00:31:29.999
is not an abortion that’s
focused on the idea of a baby,
00:31:30.000 --> 00:31:34.999
it’s focused on give me my body back, give me
my period back, get me out of this mess. Umm…
00:31:35.000 --> 00:31:39.999
These are not abortions like that. These are
abortions in which what the woman is confronting
00:31:40.000 --> 00:31:44.999
is very much the idea of a baby. This
baby would be born with whatever
00:31:45.000 --> 00:31:49.999
higgledy-piggledy disease, is higgledy-piggledy
disease such a terrible thing
00:31:50.000 --> 00:31:54.999
that my child would be better off
not being born than being born
00:31:55.000 --> 00:31:59.999
with that condition? That’s a very
different kind of abortion issue
00:32:00.000 --> 00:32:04.999
than getting unpregnant. It… It puts
the woman in the position of a mother
00:32:05.000 --> 00:32:09.999
advocating for the child about
whether it’s worth living or not.
00:32:10.000 --> 00:32:14.999
So I think that it’s umm… it brings up
so many questions about what is it…
00:32:15.000 --> 00:32:19.999
what’s with our society that we can’t tolerate
differences? I think it’s enormously ironic
00:32:20.000 --> 00:32:24.999
that at this point in history when we are
integrating people with disabilities
00:32:25.000 --> 00:32:29.999
so much more successfully into society and
we’re beginning to appreciate the values
00:32:30.000 --> 00:32:34.999
in the life of somebody with Down syndrome or life of somebody
with a physical disability that they can be contributing
00:32:35.000 --> 00:32:39.999
in reaching members of society, it’s
so ironic that at this point in time
00:32:40.000 --> 00:32:44.999
the technology has evolved and is being offered
to individuals with the implicit assumption
00:32:45.000 --> 00:32:49.999
that the technology will be used to
eradicate people with disabilities.
00:32:50.000 --> 00:32:54.999
I certainly don’t believe that people
have or should have ah… a poor view
00:32:55.000 --> 00:32:59.999
of the disabled just because they
believe that women and couples
00:33:00.000 --> 00:33:04.999
have a right to make a choice in not
having a child with serious disability.
00:33:05.000 --> 00:33:09.999
And one of the most important
aspects of this is the failure
00:33:10.000 --> 00:33:14.999
to recognize that many people
with disabilities suffer
00:33:15.000 --> 00:33:19.999
and have pain and have repeated surgery. I
just… I said, I can’t… I can’t do that.
00:33:20.000 --> 00:33:24.999
I can’t… I can’t bring a child into the world
like this. I mean, not knowing what degree
00:33:25.000 --> 00:33:29.999
and then majority of degree is on the lower end.
That’s not a life for this child at all, you know.
00:33:30.000 --> 00:33:34.999
So much… There’s enough bad things in this world,
enough prejudice in this world than to bring a child
00:33:35.000 --> 00:33:39.999
in this world that that could
on this lower end, which to me
00:33:40.000 --> 00:33:44.999
is where he would have been, because there was
too many on that end, you know. The odds were,
00:33:45.000 --> 00:33:49.999
he was going to be on that end. So
often the argument is used that
00:33:50.000 --> 00:33:54.999
the child would suffer, that we have
to prevent the suffering of this child
00:33:55.000 --> 00:33:59.999
who would be born with a… with
a terrible painful death,
00:34:00.000 --> 00:34:04.999
you know, would face a terrible painful
death. I don’t believe it. I don’t believe
00:34:05.000 --> 00:34:09.999
that an infant would choose
to die the way an adult
00:34:10.000 --> 00:34:14.999
who’s lived their whole life might choose to die at the
end of their life. You know, it’s hard to kind of admit
00:34:15.000 --> 00:34:19.999
that you don’t want the burden of raising a child who
has problems, but I guess that’s really the bottom line
00:34:20.000 --> 00:34:24.999
given that I work full-time and was
intending to continue to work full-time,
00:34:25.000 --> 00:34:29.999
given that financial resources necessary to
be able to support a child with problems
00:34:30.000 --> 00:34:34.999
and the strain on a marriage that was new.
We have to be honest
00:34:35.000 --> 00:34:39.999
that what we’re doing is using a triage. We’re
saying, this baby is going to take more resources
00:34:40.000 --> 00:34:44.999
or is going to cause us more
pain than we can handle.
00:34:45.000 --> 00:34:49.999
And if we’re honest about
that then the resor…
00:34:50.000 --> 00:34:54.999
the resource of abortion ah…
00:34:55.000 --> 00:34:59.999
gets put in a different context. I think
it has a whole different meaning.
00:35:00.000 --> 00:35:04.999
She told us that
00:35:05.000 --> 00:35:09.999
we had… you know, I could carry it. If I
did there might be implications for me.
00:35:10.000 --> 00:35:14.999
Ah… And that it wasn’t
00:35:15.000 --> 00:35:19.999
going to be a healthy child.
00:35:20.000 --> 00:35:24.999
It already wasn’t. There are pressures.
There are ah… prolife groups
00:35:25.000 --> 00:35:29.999
and there are people who ah… are saying as a
public health initiative that we should decrease
00:35:30.000 --> 00:35:34.999
the number of birth defects. But when you’re
sitting there face-to-face with a couple
00:35:35.000 --> 00:35:39.999
and a result that they have an affected
child, they’re not really thinking about
00:35:40.000 --> 00:35:44.999
the good of society, and they’re also not
thinking about who’s going to be marching outside
00:35:45.000 --> 00:35:49.999
the hospital if they choose to terminate.
00:35:50.000 --> 00:35:54.999
highly personal choice. I think I didn’t want
to be pregnant anymore. I did not want to carry
00:35:55.000 --> 00:35:59.999
that child anymore, any
longer than necessary.
00:36:00.000 --> 00:36:04.999
If the child was very severe,
what type of medical help
00:36:05.000 --> 00:36:09.999
would my medical insurance cover? What type of medical
coverage? Ah… How… How much of it would they consider
00:36:10.000 --> 00:36:14.999
a lifetime deal, you know? Would
it be just one year, two-year?
00:36:15.000 --> 00:36:19.999
Umm… If it… If it wasn’t severe
00:36:20.000 --> 00:36:24.999
then the stigma, what would… how would
other kids approach… approach him or her?
00:36:25.000 --> 00:36:29.999
I knew it’s going to be a boy. I knew that.
It was extremely important for me personally
00:36:30.000 --> 00:36:34.999
to really confirm the fact that
there was something wrong ah…
00:36:35.000 --> 00:36:39.999
mainly because I’m never sure
in my own scientific work.
00:36:40.000 --> 00:36:44.999
And it was important for me that
we take a little bit of time
00:36:45.000 --> 00:36:49.999
to ensure that the results were accurate. I
don’t know if there’s enough information
00:36:50.000 --> 00:36:54.999
that could ever reassure a parent
that terminating the pregnancy
00:36:55.000 --> 00:36:59.999
is… is absolutely necessary and
that it’s the right thing. We knew
00:37:00.000 --> 00:37:04.999
what kind of a child it was.
Umm… Another thing that
00:37:05.000 --> 00:37:09.999
was very difficult to cope with was that
till the very hard contraction started
00:37:10.000 --> 00:37:14.999
the baby was alive.
00:37:15.000 --> 00:37:19.999
So the process of birth itself killed
that baby. And that was very hard,
00:37:20.000 --> 00:37:24.999
because we went through a certain motion,
terminated the life of something.
00:37:25.000 --> 00:37:29.999
00:37:30.000 --> 00:37:34.999
It’s not easy to forget
that particular point.
00:37:35.000 --> 00:37:39.999
I remember asking her was he alive
and she said, no, he wasn’t. So…
00:37:40.000 --> 00:37:44.999
So we’re good. That was… That was good. He
didn’t suffer anything. He didn’t know anything.
00:37:45.000 --> 00:37:49.999
It was hard.
00:37:50.000 --> 00:37:54.999
But ah… I wouldn’t change
00:37:55.000 --> 00:37:59.999
my mind even now.
00:38:00.000 --> 00:38:04.999
So they shouldn’t take it away from us,
00:38:05.000 --> 00:38:09.999
00:38:10.000 --> 00:38:14.999
Ah… You know, they shouldn’t harass
physicians who have to perform abortions
00:38:15.000 --> 00:38:19.999
no matter what the reason is.
It’s not anyone else’s business
00:38:20.000 --> 00:38:24.999
when it comes to a decision that’s
already been made. The only other person
00:38:25.000 --> 00:38:29.999
I worked knew was Laurie, my supervisor
now. She was my coworker, and she knew.
00:38:30.000 --> 00:38:34.999
So that morning when I terminated with Desmond, I
did call her up and… and at that point I was crying
00:38:35.000 --> 00:38:39.999
because I was holding him. And so I was
crying, because I got to look at him.
00:38:40.000 --> 00:38:44.999
There are some scars, I think, which…
00:38:45.000 --> 00:38:49.999
I mean it’s just an event… it’s not just a common
event that we can just simply put behind us.
00:38:50.000 --> 00:38:55.000
It’s something very
important that happened.
00:39:05.000 --> 00:39:09.999
Come on baby. Come down my baby, come down, come
down, come down, come down, come down baby.
00:39:10.000 --> 00:39:14.999
Come down my baby. If you’ve
ever attended a delivery
00:39:15.000 --> 00:39:19.999
ah… being at a birth, it is an extremely
intimate moment in somebody’s life,
00:39:20.000 --> 00:39:24.999
in a couples’ life. Umm… And just
to be able to be a part of that
00:39:25.000 --> 00:39:29.999
is a privilege every time.
00:39:30.000 --> 00:39:34.999
00:39:35.000 --> 00:39:39.999
After the worries
00:39:40.000 --> 00:39:44.999
I had in the pregnancy I was not worried
about labor and delivery at all.
00:39:45.000 --> 00:39:49.999
I knew that at some point the pain would go away.
That… That was finite. It was going to end
00:39:50.000 --> 00:39:54.999
when the baby was delivered. Coming out.
It’s coming honey, it’s coming.
00:39:55.000 --> 00:39:59.999
Okay, okay… Here comes baby. Hang in there.
Here comes. Here comes baby… Yeah.
00:40:00.000 --> 00:40:04.999
Oh… Oh… Oh… Oh… There you go.
I love you sweetheart.
00:40:05.000 --> 00:40:09.999
Oh, you’re so beautiful. Come on, hey… And
then it was that, you know, that cry.
00:40:10.000 --> 00:40:14.999
It’s a girl and everybody
is jumping around and…
00:40:15.000 --> 00:40:19.999
But the birth was great. But the
birth was… was good. Yeah. Yeah.
00:40:20.000 --> 00:40:24.999
And ah… it was… it was fine, healthy baby
and beautiful… beautiful little boy.
00:40:25.000 --> 00:40:29.999
On Valentine’s Day, Juliana
Baker Cohen was born.
00:40:30.000 --> 00:40:34.999
And she looked fine. And I… And nobody…
nobody thought she had Down syndrome,
00:40:35.000 --> 00:40:39.999
except I noticed her ears were
shaped in an unusual fashion,
00:40:40.000 --> 00:40:44.999
sort of squared off. The night Michael was
born, Jim and I sat in the hospital room
00:40:45.000 --> 00:40:49.999
and drank a bottle of champagne. I mean we celebrated
his birth. Would we have been celebrating his birth
00:40:50.000 --> 00:40:54.999
if the pediatrician had just come in and said, I
have some terrible news, the baby has Down syndrome?
00:40:55.000 --> 00:40:59.999
It was like, I… I was always
clear that she would be
00:41:00.000 --> 00:41:04.999
a wonderful addition to our family.
00:41:05.000 --> 00:41:09.999
And I look at her now and I… I just think, you
know, thank God I had her, thank God I knew enough
00:41:10.000 --> 00:41:14.999
to have her, you know.
Thank God she’s here.
00:41:15.000 --> 00:41:19.999
I… I truly, so often when I look
at her, that’s what I think.
00:41:20.000 --> 00:41:24.999
I’m among those dads who likes going with a
camera. So I was busy taking lot of pictures.
00:41:25.000 --> 00:41:29.999
But after about, I don’t know, a
minute or two, I had the sense,
00:41:30.000 --> 00:41:34.999
this is not… there’s something wrong here. Things were,
I don’t know if you say that were swirling around.
00:41:35.000 --> 00:41:39.999
There’s an awful lot of busyness and it was kind of… I
felt… I kind of felt like I was suspended at midair
00:41:40.000 --> 00:41:44.999
and then finally ah… one of the ah…
00:41:45.000 --> 00:41:49.999
pediatric nurses came over and said we
need to… we need to tell you something.
00:41:50.000 --> 00:41:54.999
You need to know that your son has
Spina bifida. Next thing I knew,
00:41:55.000 --> 00:41:59.999
I was lying in bed in the recovery
room and I was confused. And umm…
00:42:00.000 --> 00:42:04.999
looking back now I feel like I wish he kind of
worked his way into it, but he just… he said,
00:42:05.000 --> 00:42:09.999
\"I don’t know any other way to tell you
this but that Ethan has Spina bifida.\"
00:42:10.000 --> 00:42:14.999
And I had a very, very
negative reaction. I umm…
00:42:15.000 --> 00:42:19.999
I… I felt like this is finally
something I can’t deal with.
00:42:20.000 --> 00:42:24.999
I was there alone. Juliana was sleeping. And I remember, it’s the
first time I’ve ever done this that, my arms went up in the air
00:42:25.000 --> 00:42:29.999
and I started to cry and I said, \"Just give
me the strength, give me the strength.\"
00:42:30.000 --> 00:42:34.999
And then I remember crying and praying. And
it wasn’t a bad feeling. It… It was just,
00:42:35.000 --> 00:42:39.999
I need the strength. I don’t… It’s
okay if Juliana has Down syndrome,
00:42:40.000 --> 00:42:44.999
but it’s not okay if I’m not there
to be who… and do what she needs.
00:42:45.000 --> 00:42:49.999
And I didn’t really know what it was. I know a doctor,
not my doctor, but a doctor that was covering for her
00:42:50.000 --> 00:42:54.999
made the statement to me, this should have
been… this should have been known before
00:42:55.000 --> 00:42:59.999
the baby was born. And I remember feeling very
resentful that he had that attitude about it.
00:43:00.000 --> 00:43:04.999
Children with disabilities are stressful,
00:43:05.000 --> 00:43:09.999
but there is a blessing in the stress too. You
know, you mature in different ways, you grow up.
00:43:10.000 --> 00:43:14.999
Umm… You’d have to grow up
with the child. Umm… So I…
00:43:15.000 --> 00:43:19.999
I… I think we needed to see that
those children make a contribution
00:43:20.000 --> 00:43:24.999
umm… of their own and
also into others lives.
00:43:25.000 --> 00:43:29.999
And, you know, you don’t know all of that that…
that’s going to be when you have some tests that says
00:43:30.000 --> 00:43:34.999
something may be wrong for what
about everything that’s right
00:43:35.000 --> 00:43:39.999
about the child. Since
when I was a little kid
00:43:40.000 --> 00:43:44.999
ah… I went to what would be
00:43:45.000 --> 00:43:49.999
Winston Prouty Center in
00:43:50.000 --> 00:43:54.999
And then I went to the
00:43:55.000 --> 00:43:59.999
Jonathan Daniels School in Keene.
00:44:00.000 --> 00:44:04.999
And then I went to the Keene Middle School.
00:44:05.000 --> 00:44:09.999
And then I went out to Keene
High School. And then
00:44:10.000 --> 00:44:14.999
I graduated last year Natasha from 1992.
00:44:15.000 --> 00:44:19.999
And we had
00:44:20.000 --> 00:44:24.999
300… between 330 to 340 graduates.
00:44:25.000 --> 00:44:29.999
Right now I’m now working
00:44:30.000 --> 00:44:34.999
at… at Cheshire County Savings Bank
00:44:35.000 --> 00:44:39.999
and also… I’m also a volunteer
fire fighter here in (inaudible).
00:44:40.000 --> 00:44:44.999
Shawn is certainly not embarrassed to
get in front of any size of crowd.
00:44:45.000 --> 00:44:49.999
He’s spoken and given speeches to as
many as I’d say 300 or more people.
00:44:50.000 --> 00:44:54.999
He doesn’t face them in
the least, so he’s… his…
00:44:55.000 --> 00:44:59.999
you know, he’s kind of has
a popularity I guess.
00:45:00.000 --> 00:45:04.999
And a lot of people now are looking
at us to see where they should go,
00:45:05.000 --> 00:45:09.999
ah… because in our… basically in the groups
that we deal with I think he is the oldest.
00:45:10.000 --> 00:45:14.999
The ones that are older than he,
unfortunately have an awful lot of problems.
00:45:15.000 --> 00:45:19.999
They don’t have… They didn’t have
any of the exposure that he had,
00:45:20.000 --> 00:45:24.999
you know, integrated education, and… and
mainstreaming, and early intervention
00:45:25.000 --> 00:45:29.999
and everything that these kids need to have.
You know, he was probably one of the first
00:45:30.000 --> 00:45:34.999
that had them. We were so prepared
for this baby. Our families knew,
00:45:35.000 --> 00:45:39.999
everyone knew. I was able to make appointments
for Michael months before he was born.
00:45:40.000 --> 00:45:44.999
I had had the early intervention program all set to
come and see. They saw him a week after he was born.
00:45:45.000 --> 00:45:49.999
We went to Children’s Hospital in Boston for a
total evaluation when he was six weeks old.
00:45:50.000 --> 00:45:54.999
I made that appointment three months
before he was born. We were able to
00:45:55.000 --> 00:45:59.999
really educate ourselves. And then when I got pregnant
the third time, umm… I really wanted to have the test.
00:46:00.000 --> 00:46:04.999
I felt that as much as I adore
my child with Down syndrome,
00:46:05.000 --> 00:46:09.999
umm… I didn’t think I wanted to have
another one at that point. I think…
00:46:10.000 --> 00:46:14.999
I thought of my older daughter and I said, \"Is
it fair for her to have two disabled siblings
00:46:15.000 --> 00:46:19.999
that she will hopefully want to
look after when she’s older?\"
00:46:20.000 --> 00:46:24.999
I didn’t think that was fair to her. I think I
was thinking more of her than anything else.
00:46:25.000 --> 00:46:29.999
So we all get prenatal testing I
think we’re growing very rapidly
00:46:30.000 --> 00:46:34.999
in… in the direction
that’s going to be testing
00:46:35.000 --> 00:46:39.999
for anything you can fear and have a test
for. It was hailed then at the beginning as…
00:46:40.000 --> 00:46:44.999
as a breakthrough and a major advance.
I think now,
00:46:45.000 --> 00:46:49.999
one looks at it as offering some very useful and
for some people very important opportunities.
00:46:50.000 --> 00:46:54.999
And it also offers for other people
00:46:55.000 --> 00:46:59.999
some terrible challenges to the way medicine
has practiced, in the way public health issues
00:47:00.000 --> 00:47:04.999
are… are framed and discussed and…
00:47:05.000 --> 00:47:09.999
and written about. There is no question
about the fact that the benefits,
00:47:10.000 --> 00:47:14.999
the advantages of having available prenatal testing
are also a burden. And they’re burden for everybody,
00:47:15.000 --> 00:47:19.999
ah… for the insurance companies that have to pay for the
tests, for the families that have to pay for the tests,
00:47:20.000 --> 00:47:24.999
the families that receive the news and
then attempt to struggle with the news,
00:47:25.000 --> 00:47:29.999
and how to react to the news, and how
to… and what to do about it. Umm…
00:47:30.000 --> 00:47:34.999
And for the professionals who may
struggle hours or days before the news
00:47:35.000 --> 00:47:39.999
is released to the parents and other
physicians on how to interpret these results,
00:47:40.000 --> 00:47:44.999
whether to repeat them, how reliable
they are and so on and so forth.
00:47:45.000 --> 00:47:49.999
And so, ah… we face therefore
the dilemma of all people
00:47:50.000 --> 00:47:54.999
who are faced with freedom and with stresses.
Ah… It is not always an unmitigated good.
00:47:55.000 --> 00:47:59.999
I want to make people miserable for
their whole lives for friendly.
00:48:00.000 --> 00:48:04.999
But I think there are some things in life that we should be uncomfortable,
some decisions that we take that should make us uncomfortable.
00:48:05.000 --> 00:48:09.999
We should not just go through life as if we
are ah… you know, as if there’s no problem.
00:48:10.000 --> 00:48:14.999
It’s not what reality is all about.
And every prenatal test
00:48:15.000 --> 00:48:19.999
should make us uncomfortable with saying, what do
we do, you may go ahead and do it, but I think
00:48:20.000 --> 00:48:24.999
we should be uncomfortable first.
One, two, three…
00:48:25.000 --> 00:48:33.000
00:48:35.000 --> 00:48:39.999
Now it seems so much a
part of who he is ah…
00:48:40.000 --> 00:48:44.999
that if he did not have Spina bifida, he wouldn’t
be Ethan. That doesn’t mean I wouldn’t love him
00:48:45.000 --> 00:48:49.999
if he didn’t have it, but he’d be a different
child. When he was three years old,
00:48:50.000 --> 00:48:54.999
he ah… started saying he hated Jesus, which is
really embarrassing when your husband is a minister.
00:48:55.000 --> 00:48:59.999
And, you know, we tried all
the approaches, ignoring it,
00:49:00.000 --> 00:49:04.999
because it was an attention getting thing. We
tried discussing it. And I can remember sitting
00:49:05.000 --> 00:49:09.999
in the chair right over here one day and him
saying that. And I said, \"Oh mommy loves Jesus!
00:49:10.000 --> 00:49:14.999
I wish you love Jesus too. Why don’t
you love him? \" And he said, \" I can’t,
00:49:15.000 --> 00:49:19.999
I can’t.\" And then he said, he was
only three years old, he said,
00:49:20.000 --> 00:49:24.999
\"Because he pulled the lever that made me
go round and round and when I came out,
00:49:25.000 --> 00:49:29.999
I couldn’t walk.\" And he,
from our family structure
00:49:30.000 --> 00:49:34.999
and from watching us pray and stuff, recognized God as being the one
in control, which is something we didn’t want to communicate to him,
00:49:35.000 --> 00:49:39.999
but his conclusion was
therefore, if I suffer pain,
00:49:40.000 --> 00:49:44.999
it’s God’s fault. And he said
to me also, \"Jesus could walk
00:49:45.000 --> 00:49:49.999
and I couldn’t.\" Having suffered
through some of these things
00:49:50.000 --> 00:49:54.999
it has made him a very loving person. And so
I… I guess I would have trouble changing that.
00:49:55.000 --> 00:49:59.999
Ah… Although there is many
things he suffers throughout,
00:50:00.000 --> 00:50:04.999
I wish I could take away for him.
00:50:05.000 --> 00:50:09.999
At one point I realized there was only one
thing missing that I needed to understand
00:50:10.000 --> 00:50:14.999
in order to get the whole picture and that was the
meaning of life. If I understood the meaning of life,
00:50:15.000 --> 00:50:19.999
this would all make sense. And it was a… that’s an
intellectual problem, that’s really what was missing.
00:50:20.000 --> 00:50:24.999
I think it’s not solvable. I mean, I think
there is no way a woman can simply sit down,
00:50:25.000 --> 00:50:29.999
be a good consumer with the Yellow Pages
and three textbooks, get the information
00:50:30.000 --> 00:50:34.999
she needs and make a rational choice. She really has
to give some thought about the meaning of life.
00:50:35.000 --> 00:50:39.999
Ah… It’s unanswerable. It’s
00:50:40.000 --> 00:50:44.999
and yet we’re asking every pregnant woman
to start confronting those decisions.
00:50:45.000 --> 00:50:50.000