Gene Blues
- Description
- Reviews
- Citation
- Cataloging
- Transcript
This outstanding video examines some of the ethical issues associated with DNA testing and sets the stage for a national debate on the ramifications of human gene technology.
As geneticists unlock the DNA code, they learn how differences in the DNA that makes up particular genes are linked to variations in physical traits - from an organism's size to its resistance or susceptibility to disease.
While this knowledge holds promise for alleviating human suffering, DNA testing has presented real problems, including
* genetic discrimination in employment and insurance
* ethical issues around testing for an incurable genetic disease
* issues of privacy and forensics surrounding DNA data banks
* prenatal genetic testing with its implications for people with disabilities
* genetic indicators being sought to explain everything from obesity to homosexuality.
Then there are the big questions. To what extent should human beings interfere in the basic workings of nature? Are some genes better than others? Who decides what is normal? This video will spark discussion.
'A brilliant look at the social implications of genetic knowledge.' Sheldon Krimsky, Ph.D., Professor of Urban and Environmental Policy, Tufts University
'An informative, useful teaching tool...a great basis for discussion.' Ruth Hubbard, Ph.D., Professor of Biology, Harvard University
'This is a great video for high school biology, general science, or even social studies classes. It is also suitable for college-level courses...The information is accurate, current, and relevant...an excellent video and I highly recommend it.' The Science Teacher
'This well-produced overview...serves as a good discussion starter for high-school classes or public library social-issues forums.' Booklist
'The key is that genetic testing should be debated by the public, not merely by a few 'experts'.' GeneWatch
'GENE BLUES offers viewers ages 16 and older with a particularly accessible and even-handed presentation on one of the most pressing medical science issues being nationally debated today. Indeed, not only should GENE BLUES be added to school and community video collections, it should be mandatory viewing for social activists, the medical community, and governmental policy makers as well...informed and informative.' Library Bookwatch, Midwest Book Review
Citation
Main credits
Young, Melissa (film producer)
Young, Melissa (screenwriter)
Young, Melissa (film director)
Dworkin, Mark (screenwriter)
Dworkin, Mark (film director)
Dworkin, Mark (videographer)
Dworkin, Mark (editor of moving image work)
Other credits
Videography/editing, Mark Dworkin.
Distributor subjects
American Studies; Biology; Ethics; Genetics; Health; Human Rights; Humanities; Insurance; Law; Medicine; Political Science; Public Health; Science, Technology, Society; Social Issues; Social Justice; Social Psychology; SociologyKeywords
WEBVTT
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[sil.]
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[sil.]
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What makes people different? Our parents?
The environment?
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The choices we make? Some scientist
say that each of us is programmed
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to become the distinct individuals we are.
The programme is written in our genes
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in a chemical called DNA.
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A knowledge of this genes is going to give us the power
to begin deciphering what makes humans different
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from one another? And, of
course, a very important aspect
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of that is why does some humans get particular
diseases and why are other humans healthy
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and live normal lives. Everyone
has their own unique DNA,
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we inherit half from each of our parents. And
genes guide how we grow and develop in the world.
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But scientists have long known that
genes don\'t operate by themselves.
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Every individual organism is the nexus,
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the consequence of the interaction
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of the genes you have, and the environment that you\'ve
developed in and random effects of those development
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and those cannot be separated.
How important is DNA?
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And what does mean for families in society?
Are some genes better than others?
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Do some of us have defective genes?
And who decides?
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We are being welcomed in the
1990s into mainstream society.
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And yet at the same time,
the message we get from
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genetic screening technologies
is that our lives are a mistake
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and should have been eliminated
before we were even born.
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Daddy, look at me!
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Jacob Turner is five years old
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but he already may owe his life to
genetics. First his uncle died,
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suddenly and for no apparent reason.
Then Jacob was just a baby, his mother.
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Jon called at 01:30 in the morning
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that the paramedics were there and she
was gone. Jacob was five months old.
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And I was just enraged that
what a price to pay to prove
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that whatever it was, was genetic.
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To discover why her children died, Jacob\'s grandmother
got everyone in the family to take a DNA test
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and an electrocardiogram. Scientist
found an unusual genetic pattern,
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which was linked to a regular
heartbeat, and Jacob has it too.
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It was hard to accept it first, it was really
hard to accept. First my wife, and my son.
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Jacob takes drugs each night
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to stabilize the rhythm of his heart. But the
families genetic troubles didn\'t end there.
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It never occurred to me, I never dreamed that when
I would apply for insurance for the two of us,
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I would be accepted and
Jacob would be denied.
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He was considered to be at major risk
(inaudible). With a pre-existing condition.
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Several s states have outlawed the use of
genetic information in health insurance,
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but the problem is even more wide spread.
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Paul Billings conducted a nationwide study of DNA
testing, he found hundreds of cases of discrimination.
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Health care, insurances, adoption,
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employment, public accommodations
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and services from the government,
access to the military.
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We need to be in a position when
applicants come to us for insurance
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that we know the same information that they
know. So that when we\'re making a decision
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whether or not to insure or what rate
to insure that we have relevant,
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you know, we have all the information
that we need to place them
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in the appropriate premium class. People
are gonna be judged not on the basis
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of who they are as individuals and what
actual behaviors and health conditions
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they have at the moment. As a matter of
fact, put on the basis of generalizations
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and stereotypes and predictions and
speculations as to health conditions
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and behaviors. They might develop in the future
because of a supposed genetic predisposition.
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Genetic test aren\'t just used in
to health care and insurance.
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Because everyone\'s genes are different, samples of
DNA can also be used for purposes of identification.
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For the first time in the crime lab,
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we\'re able to use trace amounts of
biological evidence to definitively,
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I mean to precisely exonerate or implicate suspects
in the commission of some of our society\'s
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most violent and reprehensible crimes.
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Genetic information is easily computerized. And the
FBI and other agencies are building data banks
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with DNA profiles on millions of people.
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There are few law to protect the privacy of genetic information.
These potential data banks are springing up all over.
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You\'ve the Armed Forces, you\'ve
Forensics, anytime you go into a hospital
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and give a tube of blood, new born infants
have blood taken for genetic testing.
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Here are the bloodstains on filter paper,
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we make sure it\'s the person\'s DNA
by a finger print, it\'s bar-coded
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and here\'s the (inaudible).
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The Armed Forces are gathering DNA
samples from all military personnel
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so that they\'re never again will be an
unknown soldier. It\'s important to families,
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of course, they want return of their loved ones. And of
course it\'s important to the service member himself.
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He wants to know if he pays
the ultimate sacrifice,
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that somebody will know, that
proper respects will be paid.
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Some soldiers find this program disrespectful.
Those who refuse to supply a DNA sample
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have been demoted or discharged.
And it\'s something we hold sacred
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and it\'s not something I
wanted to turn over anyone.
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I felt that I had a right, and I
thought if I displayed my sincerity,
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based upon my record,
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and my capabilities that
I probably get a waiver.
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After a difficult 18 months fight, Power finally
got a religious exemption but the program
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is still going on and others continue to resist
because they know what their DNA might be used for.
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Once you have this DNA, you can
do anything you want with it.
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It may be at the moment the military
is only using those DNA profiles
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to identify bodies of
soldiers killed on duty.
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However, they could change
that policy tomorrow.
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The Lawrence Berkeley Laboratory
is a major genetics center
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and for years, the lab secretly tested its own workers for
pregnancies, syphilis (inaudible), and sickle cell anemia.
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Yeah, I just want to know why
and what it\'s being used for.
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You know, those are my basic concerns. You know,
and if it\'s sometime it can be used against me.
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The Laboratory is saying that they
did the test, the sickle cell
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(inaudible) for my benefit and then not
informing me that they have found something,
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we don\'t know, is it helping
insurance companies, red line,
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African American employees who work at the
Laboratory. I\'ve always stepped forward
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in what I thought was wrong and tried to right things.
I\'ve been Ïinvolved at the union, I\'ve been a steward,
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so it was just unnatural step to me, this
was wrong, and it didn\'t just affect me,
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it affected my children.
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Employees took the lab to court and the public has a big
stake in the outcome. If people are afraid of DNA tests,
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because of what they might be used
for, who will get the benefits
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that genetic medicine is suppose to offer.
Atherosclerosis, obesity,
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type 2 diabetes, asthma, cancer,
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we can now approach these diseases
in a way we never could before,
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to try to get at the
underlined causes of them.
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We\'ll be able to fingerprint these things, we\'ll
able to put this information into computers
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and read out potential health histories and,
of course, the ideal situation is to be able
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to have preventive cures for
most of these diseases.
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Many diseases come from
alteration in our genes.
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To decipher our genetic code, we\'ve
begun a scientific journey called
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the \"Human Genome Project.\"
Genetic research
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is bankrolled by the government in a multibillion dollar
project to map out all the genes in the human body.
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But if the goal is to improve
public health and wellbeing,
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is this the best way to do it? There
is a vast over emphasis on the role
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that genes play in our lives, it
allows us to let society off the hook.
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It allows us to distance ourselves
from social and environmental
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causes of cancer or any other disease,
and these are actually causes
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that we can do something about.
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These new technologies raise some old and very
basic questions. Does our fate depend on our genes
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we get from our parents? What is a
normal human being? And if as some say,
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DNA is a blueprint for life, should
scientist be allowed to tinker with it?
00:10:00.000 --> 00:10:04.999
(inaudible) privacy, self
conception, normality,
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who is to decide, you know, and
those are the issues for scientist.
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Scientist can\'t answer the question,
what are the ethical, social,
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legal imperatives, concerns
around all these developments.
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This is a standard chromosomes, right here.
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And in this mess, there should be 23…
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Most families learn about genetic testing when they are
expecting a baby. My job is often a delicate balance
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between education and counseling. I
tried to help people make decisions.
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And I try to help them make a
decision that\'s most appropriate
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for them at this point in their lives.
And does she have children?
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Genetics screening gives expecting parents one more thing to worry
about. Most go along with test recommended by their doctors,
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but many don\'t really
understand what it\'s all about.
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They think that if they take this test,
it will somehow assure a healthy baby.
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Um, whereas from the scientist point of
view this is a screening test to identity
00:11:10.000 --> 00:11:14.999
defects where there is no intervention and so that
you can proceed to have an abortion if you want.
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But that is a complete disconnect with many women,
who really see it like taking their vitamins,
00:11:20.000 --> 00:11:24.999
like taking their prenatal vitamins. I have
many friends who got test results back
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and had no idea that they had under gone
some kind of genetic screening test.
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And this is first time they\'re confronted with a
prospect of raising a child with a disability.
00:11:35.000 --> 00:11:39.999
And when they discover a genetic condition, most of
those who test, decide to terminate the pregnancy.
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But there is an implication there that
if your children have disabilities,
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they\'re first of all not healthy, which isn\'t the case, you can have a
disability with proper (inaudible) healthy, you just have a disability.
00:11:50.000 --> 00:11:54.999
And that you won\'t have a normal
life, well what\'s a normal life?
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The numbers are not gonna give you the human
element as what it\'s like to raise a child
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with a special disability. So what
we try to do in that situation
00:12:05.000 --> 00:12:09.999
is to have a parent meet with another parent who
already has a child with a similar problem.
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They can talk face to face with that parent and find it, Hey what\'s it
like every single day, day in and day out to have a child like this.
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But even with the best information,
parents don\'t always have the support
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and the freedom they need, to make
the choice they believe is right.
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A pregnant woman who went to her HMO and had
a round of routine prenatal genetic tests,
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the fetus that she was carrying had
the genes for cystic fibrosis,
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a genetic condition. The HMO told her that they would
be willing to pay for the cost of an abortion,
00:12:40.000 --> 00:12:44.999
but if she elected to carry
the pregnancy to term,
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they would not be willing to
provide insurance for that infant.
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The genetic testing has changing
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the way parents feel about their babies.
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The people are not committing to the
pregnancy until they\'ve had their test.
00:13:05.000 --> 00:13:09.999
And that bonding process between mother
and fetus is delayed and that certainly
00:13:10.000 --> 00:13:14.999
must have an impact on the
mother child relationship
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and then eventually on
who that child becomes.
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Isn\'t spring your favorite season Watching
the flowers blooming out but at the ground.
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Lynne Morrow didn\'t want to bring a child into
the world who would have sickle cell anemia.
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A prenatal test said her fetus was okay,
but when daughter khalilah was born
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she had the disease. I was devastated,
and angry, and distraught,
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and at the same time trying to
figure out how in the world
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am I gonna explain this to this child,
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having taken (inaudible) precaution
that this what is happening.
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The family sued the hospital and started a
fund for khalilah\'s healthcare and education.
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Fortunately she has a
mild form of sickle cell.
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There\'s nothing wrong with me, I\'m just
(inaudible) sometime other people do so…
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Pain always exist in life,
00:14:15.000 --> 00:14:19.999
and so regardless of the source of the pain
you\'ll have to go through some and so,
00:14:20.000 --> 00:14:24.999
um, having (inaudible) the tragedy
00:14:25.000 --> 00:14:29.999
that one might think. Not having
it (inaudible) through it.
00:14:30.000 --> 00:14:34.999
Lynne Morrow\'s experience is unique.
Researchers at the University of California
00:14:35.000 --> 00:14:39.999
found that families who already
includes someone with a disability
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are less interested in prenatal test.
And more likely to have the baby,
00:14:45.000 --> 00:14:49.999
whatever the results. Many of
the families that we\'ve seen
00:14:50.000 --> 00:14:54.999
who love someone with cystic fibrosis
or with sickle cell and have said,
00:14:55.000 --> 00:14:59.999
\"Hey, if science can help us with a cure or with helping
us to care for this member of our family terrific.\"
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But other than that, don\'t bother us
00:15:05.000 --> 00:15:09.999
because family is not a place where
we\'re going to set admissions criteria,
00:15:10.000 --> 00:15:14.999
that are based on reducing
human beings to their DNA.
00:15:15.000 --> 00:15:19.999
DNA test don\'t tell you when a genetic condition
will develop or how severe it will be.
00:15:20.000 --> 00:15:24.999
But they can give a false
sense of certainty
00:15:25.000 --> 00:15:29.999
and could leave to bad policies,
like eugenic where the society
00:15:30.000 --> 00:15:34.999
or the government tries to control who
may have children and who may not.
00:15:35.000 --> 00:15:39.999
We will know a lot more about how
to diagnose cystic fibrosis,
00:15:40.000 --> 00:15:44.999
how to diagnose (inaudible)
without discovering a cure.
00:15:45.000 --> 00:15:49.999
And here\'s the teaching, as we find this gap
widening between diagnostics and (inaudible).
00:15:50.000 --> 00:15:54.999
The pressure for people to
00:15:55.000 --> 00:15:59.999
(inaudible) will be increasingly powerful.
00:16:00.000 --> 00:16:04.999
Most disabilities is not genetic,
00:16:05.000 --> 00:16:09.999
most disability is not diagnosable, most
disability will occur long after birth,
00:16:10.000 --> 00:16:14.999
even if you aborted every disabled
fetus that you could diagnose.
00:16:15.000 --> 00:16:20.000
You would avoid a fraction of disability.
00:16:25.000 --> 00:16:29.999
Oh, you\'re still in good shape.
Conditioning anyway, nice little heart.
00:16:30.000 --> 00:16:34.999
Michael Hyer lost his mother
to huntingtons disease.
00:16:35.000 --> 00:16:39.999
A rare and disabling nerve condition
that\'s passed from parent to child.
00:16:40.000 --> 00:16:44.999
He\'s trying to decide if he should get
tested to find out if he will get it too.
00:16:45.000 --> 00:16:49.999
Trying to live my life without knowing scares me. But
also knowing and finding out that I have it scares me.
00:16:50.000 --> 00:16:54.999
Did you mother or uncle get tested before they got
the disease? No, no. And you said your sister…
00:16:55.000 --> 00:16:59.999
The genetic test for huntington has been
around since 1983. But if it\'s positive,
00:17:00.000 --> 00:17:04.999
there is nothing you can
do to avoid the disease.
00:17:05.000 --> 00:17:09.999
Their perspective is to sort of hope for
the best and then plan for the worst and…
00:17:10.000 --> 00:17:14.999
Huntington (inaudible) specific, you\'re born to
a family that one of the parents has the gene,
00:17:15.000 --> 00:17:19.999
you\'ve a 50% chance of having the gene. It\'s an autosomal
dominant, you\'re gonna either get it or you\'re not.
00:17:20.000 --> 00:17:24.999
And you get it, it\'s inevitably fail, there
is no variation on the course of it.
00:17:25.000 --> 00:17:29.999
So, I\'ve often thought what could be worse than going
through what I went through with my mother, well,
00:17:30.000 --> 00:17:34.999
what\'s worse is when you go through it for yourself and
how prepared are you. You know, just sort of watch
00:17:35.000 --> 00:17:39.999
and each day wondering, each time
that your hand shakes or each time
00:17:40.000 --> 00:17:44.999
that you don\'t quiet break the car fast enough, or each
time that you stutter a word, you can\'t remember a name.
00:17:45.000 --> 00:17:49.999
That this is, this thing
is onside, this is it.
00:17:50.000 --> 00:17:54.999
Very few genetic conditions are as extreme as
huntingtons. And in most cases, modern medicine
00:17:55.000 --> 00:17:59.999
has already improved patients lives. Okay now
push your shoulders up. Okay, that\'s good.
00:18:00.000 --> 00:18:04.999
Squeeze my hand, not too hard. Good.
00:18:05.000 --> 00:18:09.999
Sickle cell anemia is the most serious
genetic illness among African Americans.
00:18:10.000 --> 00:18:14.999
We\'re at a time we know a great
deal more about sickle cell,
00:18:15.000 --> 00:18:19.999
how to keep people alive, how to cure the disease,
how to extend their life and the quality of life.
00:18:20.000 --> 00:18:24.999
At the same time we\'re being significantly
limited in the resources to do that.
00:18:25.000 --> 00:18:29.999
Close my door. Hi, doctor, (inaudible).
His mother died about two years ago,
00:18:30.000 --> 00:18:34.999
why, almost three years ago, and she
had sickle cell disease like him.
00:18:35.000 --> 00:18:39.999
But when Marcus was born, then we kind
of knew because I had the disease
00:18:40.000 --> 00:18:44.999
and she had it and so knew
Marcus also gonna have it.
00:18:45.000 --> 00:18:49.999
Drugs, nutrition and careful monitoring can now
eliminate many complications of sickle cell.
00:18:50.000 --> 00:18:54.999
The major cause of death in
sickle cell disease unfortunately
00:18:55.000 --> 00:18:59.999
or fortunately are complications
that I believe are preventable,
00:19:00.000 --> 00:19:04.999
and if the health care system
had a priority to prevent death
00:19:05.000 --> 00:19:09.999
in these patients and it was not course limited,
most of the death in sickle cell would be postponed
00:19:10.000 --> 00:19:14.999
for a good 25 years from
where they\'re happening now.
00:19:15.000 --> 00:19:19.999
There\'s been a genetic test for sickle cells
since the 1970s but that hasn\'t led to a cure.
00:19:20.000 --> 00:19:24.999
Many patients still don\'t have access to
comprehensive treatment centers like this one.
00:19:25.000 --> 00:19:29.999
The story is similar with cystic
fibrosis who\'s gene was found in 1989.
00:19:30.000 --> 00:19:34.999
This is the most common
fatal genetic disorder
00:19:35.000 --> 00:19:39.999
in the Caucasian population, and
it\'s really the lung infections
00:19:40.000 --> 00:19:44.999
and the progressive lung damage
that causes these patients to die.
00:19:45.000 --> 00:19:49.999
And it still is 100% fatal (inaudible).
00:19:50.000 --> 00:19:54.999
We known how to cure this disease in
theory. We simply need to put into cells
00:19:55.000 --> 00:19:59.999
a good copy of the otherwise defective
gene and we\'ve done it in the lab.
00:20:00.000 --> 00:20:04.999
One approaches to genetically
engineered virus so that it contains
00:20:05.000 --> 00:20:09.999
the healthy genes and then put
that virus in patients lungs.
00:20:10.000 --> 00:20:14.999
When we give a gene using a virus,
00:20:15.000 --> 00:20:19.999
it works but the patient fairly
quickly is able to disable the virus.
00:20:20.000 --> 00:20:24.999
The problem is that our immune
system fights off the viruses
00:20:25.000 --> 00:20:29.999
and even if scientist
find a way around that…
00:20:30.000 --> 00:20:34.999
Then you have to convince the cell that it wants
to make this gene instead of its own genes.
00:20:35.000 --> 00:20:39.999
And the body is set up a lot of
defense mechanisms not to do this,
00:20:40.000 --> 00:20:44.999
or otherwise we\'d all be
mutated all the time.
00:20:45.000 --> 00:20:49.999
It\'s not easy knowing the gene for any
owners has yet to bring about a cure.
00:20:50.000 --> 00:20:54.999
Still researchers are seeking genetic
basis for most common diseases,
00:20:55.000 --> 00:20:59.999
where the market could be vast though
the genetic links are more remote.
00:21:00.000 --> 00:21:04.999
Because one can find examples where if I know if there is
a mutation, it will inevitably result in some disorder.
00:21:05.000 --> 00:21:09.999
People tend to think
everything is like that.
00:21:10.000 --> 00:21:14.999
Whereas most thing are not like that,
in most cases, if there is some change
00:21:15.000 --> 00:21:19.999
in the genes, it may change the probability
or the likelihood or the conditions
00:21:20.000 --> 00:21:24.999
under which some disease develops
but it doesn\'t guarantee anything.
00:21:25.000 --> 00:21:29.999
There is some interesting research on the
genetics of cancer, especially breast cancer
00:21:30.000 --> 00:21:34.999
because genes are very involved on
how cancer works. Cancer arises
00:21:35.000 --> 00:21:39.999
when cells grow out of control, and body\'s
normal housekeeping genes fail to do their job
00:21:40.000 --> 00:21:44.999
of keeping things in order. Now, in fact,
00:21:45.000 --> 00:21:49.999
very few cases of breast cancer arises because
it defects in genes the people are born with.
00:21:50.000 --> 00:21:54.999
So this means that something in the
environment is interacting with the genes
00:21:55.000 --> 00:21:59.999
and causing it to stop doing its job.
00:22:00.000 --> 00:22:04.999
This is not a disease that if you just put on your
wig and put on your make up, you are gonna be fine.
00:22:05.000 --> 00:22:09.999
50% of the women diagnose with this
disease today, will die within 15 years.
00:22:10.000 --> 00:22:14.999
And the mortality rates are not going down. Vast majority
of the breast cancers that we find are not hereditary.
00:22:15.000 --> 00:22:19.999
However breast cancer is
probably the major fear
00:22:20.000 --> 00:22:24.999
of disease that most woman have and if there
is anybody in your family with breast cancer,
00:22:25.000 --> 00:22:29.999
you\'re going to wonder, if
have a susceptibility or not.
00:22:30.000 --> 00:22:34.999
There is a small number of families
that have a history of breast cancer,
00:22:35.000 --> 00:22:39.999
researchers spent 15 years
studying these families
00:22:40.000 --> 00:22:44.999
and they found a gene called BRCA1.
00:22:45.000 --> 00:22:49.999
It\'s a gene which is fundamentally evolved
to work in those cells in a normal way,
00:22:50.000 --> 00:22:54.999
in its normal function is to allow the cells
to proliferate when the breast needs to,
00:22:55.000 --> 00:22:59.999
beings to start making milk and allow the cells
under tight control when that\'s important.
00:23:00.000 --> 00:23:04.999
If the genes you have don\'t work right, breast
tissue can grow uncontrolled and become cancerous.
00:23:05.000 --> 00:23:09.999
It\'s a story Denah Joseph knows well.
She lost her partner
00:23:10.000 --> 00:23:14.999
and two sisters to breast cancer. Either our
parents work through some radioactive cloud
00:23:15.000 --> 00:23:19.999
when my mother was pregnant or you
know, when we were a young family
00:23:20.000 --> 00:23:24.999
or who knows what I mean…
00:23:25.000 --> 00:23:29.999
With a breast cancer in her family, you\'d
expect if Denah want to be tested to see
00:23:30.000 --> 00:23:34.999
she has a defective BRCA1
gene, but she doesn\'t.
00:23:35.000 --> 00:23:39.999
For me it\'s not a real question unless there were something
at the under that test that would be meaningful.
00:23:40.000 --> 00:23:44.999
It would make a difference in
my opportunities or options.
00:23:45.000 --> 00:23:49.999
If a woman is found to have a genetic susceptibility,
we don\'t know what to tell her what to do.
00:23:50.000 --> 00:23:54.999
Um, we\'re ready if somebody has a
family history of breast cancer,
00:23:55.000 --> 00:23:59.999
see how frequently (inaudible) every
six months, every four months,
00:24:00.000 --> 00:24:04.999
they\'ll be doing their own monthly breast
exam, we\'ll get you (inaudible) grams.
00:24:05.000 --> 00:24:09.999
If they, though they have a high susceptibility to
breast cancer, we may recommend the same things.
00:24:10.000 --> 00:24:14.999
When they test negative, the
concern we all have I think,
00:24:15.000 --> 00:24:19.999
who are working on this issue is that, they can
conclude that they are not at risk for breast cancer.
00:24:20.000 --> 00:24:24.999
But when in fact they\'re, is it the normal what\'s
now being called background risk for breast cancer
00:24:25.000 --> 00:24:29.999
which is one in eight
by the time you are 85.
00:24:30.000 --> 00:24:34.999
Some women do want the test, they feel reassured
if it turns out negative. And if it\'s positive,
00:24:35.000 --> 00:24:39.999
some women have their breast surgically
removed in an effort to avoid cancer.
00:24:40.000 --> 00:24:44.999
When a convenient though expensive
BRCA1 test kit hit the market,
00:24:45.000 --> 00:24:49.999
the controversy intensified.
The science is way ahead,
00:24:50.000 --> 00:24:54.999
not only with the public policy but at the health care system.
In the mean time, we have companies marketing the test,
00:24:55.000 --> 00:24:59.999
to individual doctors who then turn
around and offer it to their patients.
00:25:00.000 --> 00:25:04.999
When one person gets a test, and a mutation is
discovered or not, they\'re really doing something
00:25:05.000 --> 00:25:09.999
that affects their entire family, not
just themselves. And I am very concerned
00:25:10.000 --> 00:25:14.999
that people will not have adequate genetic counseling
support to make sense of the information given to them
00:25:15.000 --> 00:25:19.999
and make rational decisions.
00:25:20.000 --> 00:25:24.999
Where is this very sensitive information
gonna go in the medical record.
00:25:25.000 --> 00:25:29.999
And who knows what impact
that could have on a person\'s
00:25:30.000 --> 00:25:34.999
employment options or insurance options
00:25:35.000 --> 00:25:39.999
or future.
00:25:40.000 --> 00:25:44.999
The direct marketing of these kinds of genetic tests, especially
early on when their ultimate value hasn\'t been determined
00:25:45.000 --> 00:25:49.999
that they need to be… It needs
to be very careful regulated.
00:25:50.000 --> 00:25:54.999
And that in particular that kind
of marketing should not be done
00:25:55.000 --> 00:25:59.999
by the organization that have a real
financial interest in the test.
00:26:00.000 --> 00:26:04.999
Research on the genetic
tests of breast cancer
00:26:05.000 --> 00:26:09.999
has helped to clarify how the disease works. But the DNA
tests still doesn\'t stop breast cancer from occurring.
00:26:10.000 --> 00:26:14.999
Why do people acquire these defects?
00:26:15.000 --> 00:26:19.999
And what can we do to prevent that from happening?
So, we\'ve to take a step back from this,
00:26:20.000 --> 00:26:24.999
focus on identifying those
were genetically susceptible
00:26:25.000 --> 00:26:29.999
and ask what we can do to prevent such susceptibility
from occurring by keeping the environment cleaner
00:26:30.000 --> 00:26:34.999
in the first place.
00:26:35.000 --> 00:26:39.999
Vice Council, wake up.
00:26:40.000 --> 00:26:48.000
So, this a voice opps…
00:26:50.000 --> 00:26:54.999
One way to judge a technology is by the affect that it has on people. John Kelly
became paralyzed more than a dozen years ago, technology helps him live independently,
00:26:55.000 --> 00:26:59.999
while earning a PhD in sociology.
00:27:00.000 --> 00:27:04.999
The problem with disability is not the
disability itself but the lack of social support
00:27:05.000 --> 00:27:09.999
and resources provided to
people with disabilities.
00:27:10.000 --> 00:27:14.999
The problem isn\'t using a wheel chair,
00:27:15.000 --> 00:27:19.999
the problem is that there are steps
that the wheelchair can\'t go through.
00:27:20.000 --> 00:27:24.999
People with disabilities have
wonderful skills, resources, talents,
00:27:25.000 --> 00:27:29.999
and perspectives to offer the world.
And at the same time it\'s true,
00:27:30.000 --> 00:27:34.999
there is no reason to pretend that
disability is not hard. It\'s a hassle,
00:27:35.000 --> 00:27:39.999
and we have to get help.
00:27:40.000 --> 00:27:44.999
But that doesn\'t mean
00:27:45.000 --> 00:27:49.999
that what we have to offer isn\'t worth it.
Society can use technology
00:27:50.000 --> 00:27:54.999
to become more open than inclusive, but genetic
technologies could be used to alter human embryos,
00:27:55.000 --> 00:27:59.999
so only certain kinds of
people would be born.
00:28:00.000 --> 00:28:04.999
Who would decide which genes are acceptable.
I\'m of great believer in natural evolution
00:28:05.000 --> 00:28:09.999
and that has used natural
selection from millions of years
00:28:10.000 --> 00:28:14.999
and sort of come out with the best solution, we may
not like that solution but it was the best solution
00:28:15.000 --> 00:28:19.999
and to try and rapidly
move up that evolution,
00:28:20.000 --> 00:28:24.999
we may be asking for things
we don\'t know what it is.
00:28:25.000 --> 00:28:29.999
I\'m really frightened by those
who assume that, you know,
00:28:30.000 --> 00:28:34.999
I have the capacity to create
the perfect human being.
00:28:35.000 --> 00:28:39.999
Well, I\'m not sure because to human
being is more than the physical flesh,
00:28:40.000 --> 00:28:44.999
the human being has soul.
00:28:45.000 --> 00:28:49.999
[music]
00:28:50.000 --> 00:28:54.999
Studying our genetic
differences can help diagnose
00:28:55.000 --> 00:28:59.999
and treat certain diseases. But we need
to be careful about focusing too much
00:29:00.000 --> 00:29:04.999
on the differences people are born with.
00:29:05.000 --> 00:29:09.999
The real issue is, is that where human misery
is coming from? Is that what it\'s all about?
00:29:10.000 --> 00:29:14.999
Is that the future of dealing with human
health and welfare. Most people on the world
00:29:15.000 --> 00:29:19.999
are not dying genetic diseases. Must be in
the world of over working and under eating.
00:29:20.000 --> 00:29:24.999
All of us are going to be
discovered to have bad genes.
00:29:25.000 --> 00:29:29.999
All of us have something
in our genetic makeup.
00:29:30.000 --> 00:29:34.999
Is the issue to try the
literally micro manage
00:29:35.000 --> 00:29:39.999
the scene and get into the DNA or should
we spend our money, our interest,
00:29:40.000 --> 00:29:44.999
or energies trying to understand
how the social fabric,
00:29:45.000 --> 00:29:49.999
the economical and political
fabric better explain poverty,
00:29:50.000 --> 00:29:54.999
illness and disease.
00:29:55.000 --> 00:29:59.999
That the enormous (inaudible) of genetic diversity is
simply the (inaudible) out of evolution at a positive way.
00:30:00.000 --> 00:30:04.999
And by simply recognizing
00:30:05.000 --> 00:30:09.999
that reality that there are enormous number of different
ways to be human. What we now have an opportunity to do
00:30:10.000 --> 00:30:14.999
is to treasure and retain
00:30:15.000 --> 00:30:19.999
and celebrate the genetic
diversity of our species.
00:30:20.000 --> 00:30:25.000
[music]
00:30:55.000 --> 00:31:00.000
[sil.]