WEBVTT

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[music]

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April in Paris, on the first floor of

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the Mezzo Di (inaudible)

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These people are old members of a Genealogy
Club from Auvergne in Central France.

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They have volunteered to take part in a
study conducted by American researchers.

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This morning, they will undergo genetic
testing that will reveal the distant origins.

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Press on this like that.

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How much you need? More or…

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More, more. One tiny pinprick for science.

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The guinea pigs happily agreed to give a
little of that DNA, the genetic heritage,

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saliva on a cotton bud, a few drops of
blood, a gold mine of data for the biologist

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studying the genetic diversity
of the world\'s population.

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But this morning, the scientists are not
content just to take a sample of their genes

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and tropometrical photos(ph), images of
the iris, measures of skin pigmentation,

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3D photos, to what possible use
can all these data be put?

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[music]

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What use does an American University
database have the people from Auvergne?

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Is it really possible to find our
ancestors\' footprints in a drop of blood?

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What can our genes tell us about ourselves?

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In treed, we decided to find our more

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about the science that claims to ready out origins in our
genes. It is science that has made spectacular progress

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since the human genome was
finally decoded in 2003.

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The genome is our genetic heritage,
a message inscribed in our cells

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within the chromosomes on a long
filament, the twist and turns,

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DNA, a sequence of chemical signals that is
the equivalent of three billion characters

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among which are our genes, The
instruction that determine

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how a living organism works. The
decoding of the Book of Life

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provided genetic scientists with a map to
guide them for the laborant of ancestry.

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What remains to be understood is
the exact function of our genes.

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To explain for example, what distinguishes
us from each other? Where 95% of us

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share the same DNA passed
down through the generations.

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The Genealogy Club members

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came from Auvergne to Paris on
the trail of their ancestors.

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Eight weeks after the tests, as the results were posted on
the Internet in the United States, we paid them a visit.

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A culture clash. On the one hand,

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genetic technology that promises
to unveil 10,000 years of history,

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on the other, family history.

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At the Annual Genealogy Conference in Auvergne,
everybody is talking about the results.

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DNA and genetics have replaced birth registers and
parish archives as the major topic of discussion.

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The genetics knows no borders.

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Over the last five years, private laboratories
has sprung up all over the US and Europe.

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On the internet, they advertise tests
that are designed for the general public,

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paternity testing, heredity or the
identification of hereditary diseases,

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genetic awareness is increasingly
common but can prove very dangerous.

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An example, in Paris at the Pitié-Salpêtrière
Hospital where people are worried.

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Here, Doctors psychologists
and nurses meet once a month

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to consider the psychological effects of the discovery
of a hereditary illness on patients and their families.

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Hi, good morning. May I
speak with Marc Bauchet?

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[music]

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Of the Eastern Seaboard of the United States,
at the immense Penn State University campus

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we meet the researcher who came to Paris to
test the Auvergne Genealogist, Marc Bauchet.

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Marc Bauchet has just got back from Brazil.
This year the testing campaign is harvested

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over 3,000 samples.

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This is one of a select number of laboratories
specializing in genetic anthropology

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on the frontier between
social sciences and biology.

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The head of the laboratory Mark Shriver is
acknowledged worldwide as an expert in his field

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studying the differences between
individuals and peoples.

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In our lab we focus on human population genomics
we\'re interested really and how you use evolution

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as a… as a tool to understand different
aspects of what it is to be human.

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All right, Mark, we\'re trying to
find the ancestry profile for

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ID number 061017.

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Okay, there she is, Cécile Chambon

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from Auvergne in (inaudible), 70% European,

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20% Native American, 10% East Asian.
She\'s… she\'s mostly European but

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she\'s got something else that… that
the test itself cannot disambiguate.

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And the tests is not sensitive enough
to say whether it\'s from who knows

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the Middle East or Central Europe or
maybe she\'s got some Jewish or Gypsy

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or back from Quebec or something
like that, who knows.

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Here, the blood samples collected in Paris
become a precious source of information.

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Once the DNA is extracted, it is
cross-checked against a database of

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10,000 individuals from all over the world.
Dividing the world\'s population

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into categories using their genetic
differences. But according to what criteria

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Mark Shriver and his team combine
various disciplines, biology,

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anthropology and statistics. So those
three, they\'re not even North Italian,

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when I looked at them they all have light
eyes but they still have dark hair and yeah…

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We should have done some more French people
to see if other French fit in the middle too.

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Yeah, yeah, yeah, we should,
we will make it migrant.

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Probably about 95% of the genes or more
are not very different among anybody,

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you know, they evolve
to suit that population

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that Paleolithic population and they work and
they still work and no population has become

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any different at those genes. But then
there\'s some small number of genes

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like the skin color genes that are different between people,
you\'ve both within populations of between population.

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So those are the genes that are interesting to me
and those are the genes that we can talk about

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as having evolved recently.
Determining the genetic origins of

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a person\'s skin color is a to boo
subject for mainstream science

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but Dr. Shriver\'s team has made it this special, a complex
mechanism, the researchers are attempting to unravel.

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The title of our project is the
Genetics of Human Pigmentation,

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Ancestry and Facial Features. How many
genes are involved in the color of skin

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is a complex question because there\'s probably
up to a 100 different genes that we know

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about already that affect coloration
but which ones are really determining

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most of the variation within a group or
between two groups is a much smaller number.

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We know there\'s probably about five or
eight genes that are different between

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West Africa and Europe and in fact, we know
what two of the main ones are, SLC24A5

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which was mapped in the zebrafish
first and then shown to be

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a human skin color gene and MATP, so
together those determine maybe half of

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the variation in skin color
among African-Americans.

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Once those are identified, we can create a formula
where, you know, depending on what your genotype is,

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you know, the five or the ten
different markers, we can make

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an estimate of what
somebody\'s skin color is.

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[music]

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Right…

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We may be able to tell you in
two years if we have some genes

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that determine some parts of the face, maybe
in five years we\'ll have a really good idea of

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how much we can describe
for the average person.

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Genetics apply to morphology, what is Dr.
Shriver\'s aim exactly?

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[music]

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We\'ve made lots of progress,
coming forward with new markers,

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we have some skin color markers now, some eye
color markers, so we\'re really well on our way

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to having some, some great discoveries. There\'s lots of
people interested too. You know, it\'s always intrigued me

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how far can we go in being able to
estimate what somebody looks like

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and you know, there\'s, there\'s lots of bad guys
out there, so and I think there\'s lots of cases

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where this could really be fundamental in, you know,
catching somebody before they commit more crimes.

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[music]

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Apparently, this research is intended
to be used in police investigations.

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A considerable step away from the simple ancestry
test that was presented to the guinea pigs in Paris

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where they fully aware that that data would be
used by a private company, DNA Print Genomics

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which has employed Dr. Shriver as a consultant.
You know, there are very few companies

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really going forward and looking
for the markers that will help us

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do the most we can do with DNA
in terms of forensic science.

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The DNA Prints really,
they are at the forefront

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and I\'m, I\'m, I\'m a constant supporter
of them, you know, I consult with them,

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I help… help them and we have some
nice collaborative projects going on.

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[music]

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We traveled to Sarasota on the Florida coast where
DNA Print Genomics, one of the American pioneers of

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the biotech market is based.
These discrete offices

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has a company that is expanding rapidly.

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May I see Matt Thomas?

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Yes, hold on just one sec. Matt,
there\'s somebody out here for you.

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Good to meet you. Yes, you too. Yeah.

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So this is one part of our lab.

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Basically, what we\'re doing
is sequencing your DNA. Yeah.

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And there\'s lots of different ways to do that. This
particular instrument just does it very efficiently

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but it does it at a very precise location.
This technology was developed to do,

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you know, large numbers of samples at
large number of markers very quickly.

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Now we can do 400 snips

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on 300 people in a day.
Imagine if you had a room of

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like 20 of them… DNAPrint\'s main business

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is selling ancestry tests
to the general public.

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We\'ve had everybody from, you know, I was
adopted and I know nothing about myself.

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To people who just have a curiosity
think, the whole idea of

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learning about their DNA is fascinating.
We also have a fair number of people

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give it as a gift. The company\'s
secondary business is more confidential

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and intended for police forces around the
world. What\'s the proportion of business

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you do for forensic and for ancestry?
Since we\'re publicly traded company,

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information like that can influence whether people buy or
stock or not… Yeah, yeah, okay, okay. So I can\'t really

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give those kind of numbers… And you
are the only one in the market?

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Right. Here is some
certificates we\'ve received for

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some of the work we\'ve done over the years. Some
of these deal with being structures at various

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forensic meetings, umm… some
notices of appreciation

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from various law enforcement groups we\'ve worked
with. We\'ve definitely had some good successes.

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When you have an investigation,
sending the sample in

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and you report back to them the score is some
percentage European, the very next question

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they always ask me is what does that mean?
Am I looking for what kind of person

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and then we\'d asked the database, who,
who\'s like that, what\'s the range of

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physical features that might be observed
in people who have that similar profile,

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are they fair skinned, dark skin,
it\'s really the beginning of

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our study of trying to understand
how you can predict physical traits

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from a person\'s DNA. For the
forensic version we made available

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a database of individuals who
volunteer to be part of the database.

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(inaudible) one of the
genealogist tested in Paris,

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he know figures on a forensic database
dedicated to the pursuit of criminals.

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[music]

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We already have another test

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that determines a person\'s eye color
from their DNA, so it\'s easy to imagine

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that by looking at information
in the DNA, we can determine

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the shape of somebody\'s skull possibly, are
there ear lobes attached or unattached,

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trying to take the idea of a fuzzy
photograph and start to focus it again

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by applying more information
that we can extract from the DNA

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and that\'s kind of where we came out the name
of DNA Witness was the DNA is the witness to

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the murder or the crime. This expertise has
already been used in investigations in the US

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but what scientific credibility
can be accorded to software,

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(inaudible)a curious combination of
scientific, financial and police interests.

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[music]

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Yeah, these methods are
indeed used by police forces

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such as the Metropolitan Police in London
where we continue our investigation.

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Yeah, I\'m supposed to meet today at noon.

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Yeah, basically the story of
the rapist and the way use DNA

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test in that… Okay, okay.

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[sil.]

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The UK boasts one of the most extensive
surveillance networks of any country in the world.

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No, why? No, no. Why?

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Private property. Four million
CCTV cameras in the streets,

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but since new antiterrorist legislation
was passed in 2003, it is illegal

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to film public places without permission. A
strange welcome awaits us at the police station.

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Appointment here? Yeah. What\'s it for?
The French TV. French TV?

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Yeah. Well, okay. Can you
turn off first please? Why?

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[sil.]

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[music]

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If you arrested this morning,

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your DNA could have gone on the database.
We would have had the power to take it

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and what\'s more, I had
the power to retain it.

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Oh, how long does it keep?
Forever. Forever?

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Yeah. Now, I think in the UK we probably
have the most comprehensive DNA database of

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any country in the world.
Detective Inspector Nick Chalmers

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is leading the hunt for a serial rapist who\'s
been terrorizing victims in South London

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for 16 years. Ten days ago, Chalmers made
another appeal on national television.

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Hello and welcome to

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Crimewatch LIVE, Manhunts on the name of
the game. Dozens of detectives are here to

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act on your calls on one of the biggest
investigations of the last two decades.

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The terrible truth is you learn an awful lot
about someone who has attacked 98 people

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kept doing it for 16 years but
that manhunt could end tonight

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if you can join the dots
and workout who it is.

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This man will attack in London, I\'m
sorry, during the hours (inaudible)

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The masked (minstead) rapist rides off on
a motorbike without killing his victims,

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old ladies in the southeastern
suburb of London,

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he is an elusive and intelligent criminal. His DNA
is not among the five million genetic fingerprints

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on the UK Police\'s national database.

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The demand from the public is that we catch this man
quite rightly. Most of the descriptions were saying

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he was black but not all of them, some was
saying he was white and so we couldn\'t be sure.

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And so we went to a company in

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America Print Genomics who were doing
some groundbreaking work with DNA.

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They sent us a sample for analysis
with our DNA Witness Technology

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and we\'ve been working with them ever since
then. They try to find ways to improve

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and better understand the results
of that initial testing.

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And the first and most important thing was they
confirmed that he was black and so of course,

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we… we could now eliminate every white man.
But once we ran that tests

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and developed the information suggesting
the person was of high African ancestry

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with a little bit of Native American… There
was about 12% Native American which was

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again a fairly high proportion. Base
to that that Native American ancestry

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in the… the scores suggests

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a population who\'s had contact
with the new world in contrast to

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let\'s say a population
specifically from Africa directly.

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What we did with that information was
look to see whereabouts in the world

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that combination of DNA we were likely
to find and the obvious place was

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the Caribbean and so a small
same from the inquiry

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went out to some of those Caribbean islands,
spoke to the local police and took samples

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from the local population
which then went back to

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Print Genomics to help build up
this database. They suspect that

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the probability is that our
person comes from the Trinidad\'s,

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the Barbados, Granada. So we\'ve really
focused in on a particular area

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which allows them to bring
best use of their resources.

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If you can cut those costs and the time you have
to spend on investigation by employing science,

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however much that science
costs, in the long run

00:30:35.000 --> 00:30:39.999
it becomes very cost effective. But this massive
deployment of resources produced nothing.

00:30:40.000 --> 00:30:44.999
The Minstead Rapist is still at large.

00:30:45.000 --> 00:30:49.999
And I\'m aware of course that the science keeps
on moving on and that it won\'t be long before

00:30:50.000 --> 00:30:54.999
they can give us an far more
information things like

00:30:55.000 --> 00:30:59.999
the eye color, hair color and
face shape, facial features

00:31:00.000 --> 00:31:04.999
and great tools, when all we
have is that basic DNA sample.

00:31:05.000 --> 00:31:09.999
DNA, which until now

00:31:10.000 --> 00:31:14.999
had only been used for identification purposes
has become a vital tool for the police

00:31:15.000 --> 00:31:19.999
in their investigations.

00:31:20.000 --> 00:31:24.999
Back to the United States

00:31:25.000 --> 00:31:29.999
where the method was developed, in Richmond,
Virginia, America\'s first criminal genetic database

00:31:30.000 --> 00:31:34.999
was created 20 years ago by Dr. Paul
Ferrara, the Head of the state\'s Division of

00:31:35.000 --> 00:31:39.999
Forensic Science. He opens the doors
of his lab, the holy of holies of

00:31:40.000 --> 00:31:44.999
DNA fingerprinting.

00:31:45.000 --> 00:31:49.999
Through here is DNA.

00:31:50.000 --> 00:31:54.999
See now all of this is
secured now from here.

00:31:55.000 --> 00:31:59.999
Now we can\'t go in there because
we have to get dressed up

00:32:00.000 --> 00:32:04.999
like they are because contamination issues.

00:32:05.000 --> 00:32:09.999
Yeah. Here, not only every physical
precautions taken but also ethical and legal.

00:32:10.000 --> 00:32:14.999
In the United States, I think there is

00:32:15.000 --> 00:32:19.999
a lot of privacy concerns, more so then in,

00:32:20.000 --> 00:32:24.999
and certainly in England.
Unlike England for example,

00:32:25.000 --> 00:32:29.999
we don\'t keep DNA data, DNA samples of

00:32:30.000 --> 00:32:34.999
suspects or victims, you either have to be

00:32:35.000 --> 00:32:39.999
a convicted felon or arrested
for a violent felony

00:32:40.000 --> 00:32:44.999
to go into the DNA data bank.

00:32:45.000 --> 00:32:49.999
Paul Ferrara teams have so far never used the genetic
investigation techniques developed by DNAPrint Genomics.

00:32:50.000 --> 00:32:54.999
I don\'t think it has much value
in criminal investigations.

00:32:55.000 --> 00:32:59.999
Why? Because I think it\'s too misleading.

00:33:00.000 --> 00:33:04.999
Uh… We talk about ancestry,
uh… we talk about

00:33:05.000 --> 00:33:09.999
Middle European or Eastern Africa

00:33:10.000 --> 00:33:14.999
or uh… Asian.

00:33:15.000 --> 00:33:19.999
Well, this world is becoming
much more complicated than that.

00:33:20.000 --> 00:33:24.999
People I can\'t be compartmentalize.
Typically, there\'s more variation

00:33:25.000 --> 00:33:29.999
within a population than
there is between them.

00:33:30.000 --> 00:33:34.999
We have an appointment with

00:33:35.000 --> 00:33:39.999
one of America\'s most respected biologists, the
men who chaired the Ethics Working Group of

00:33:40.000 --> 00:33:44.999
The Human Genome Project,
Professor Jonathan Beckwith.

00:33:45.000 --> 00:33:49.999
We present him with a copy of a brochure
produced by DNAPrint Genomics to publicize

00:33:50.000 --> 00:33:54.999
his identification software DNA Witness.

00:33:55.000 --> 00:33:59.999
Proprietary photo and (inaudible), this
really sounds scarier, doesn\'t it?

00:34:00.000 --> 00:34:04.999
Yeah. I didn\'t read it before.
Yes. It\'s just you has,

00:34:05.000 --> 00:34:09.999
there is this feeling of kind of secret ways
of spying on people without their knowing it.

00:34:10.000 --> 00:34:14.999
Do you have an extra copy of this or…?
Scientists in the Human Genome Project,

00:34:15.000 --> 00:34:19.999
when the genome was pretty much completed, they
held a press conference and they made a statement

00:34:20.000 --> 00:34:24.999
that we\'ve proven that race doesn\'t exist,

00:34:25.000 --> 00:34:29.999
so they were making an effort and based on
the idea that we share all these genes,

00:34:30.000 --> 00:34:34.999
we\'re pretty much the same. This
kind of thing is more amorphous,

00:34:35.000 --> 00:34:39.999
it\'s harder to get your hands on it.
I don\'t like the way

00:34:40.000 --> 00:34:44.999
it\'s going at this, this point. We did
foresee there could be problems with

00:34:45.000 --> 00:34:49.999
genetic testing if it
were expanded too far.

00:34:50.000 --> 00:34:54.999
The idea that genetic testing companies
would emerge that would be selling

00:34:55.000 --> 00:34:59.999
large number of tests in ways that it
is not monitored very well in terms of

00:35:00.000 --> 00:35:04.999
what their consequences might be is
certainly been one of those consequences

00:35:05.000 --> 00:35:09.999
we didn\'t anticipate. DNA testing
can determine where in Africa

00:35:10.000 --> 00:35:14.999
our forebears were from, among those using
the test to trace their family past,

00:35:15.000 --> 00:35:19.999
Spike Lee, Oprah Winfrey and actor Isaiah
Washington, one of the stars of Grey\'s Anatomy.

00:35:20.000 --> 00:35:24.999
Brother Washington, your mitochondrial DNA, it\'s
quite common among the Mende and Temne people

00:35:25.000 --> 00:35:29.999
in Sierra Leone

00:35:30.000 --> 00:35:34.999
We are been disconnected from our
history as a result of the slave trade

00:35:35.000 --> 00:35:39.999
and our service helps to bridge that gap and
we connect people with their histories.

00:35:40.000 --> 00:35:44.999
We charge at $299

00:35:45.000 --> 00:35:49.999
to trace a single lineage. For which clients
accent a certificate that indicates

00:35:50.000 --> 00:35:54.999
the likely origins of their ancestors and a
brochure on the history of the African tribes

00:35:55.000 --> 00:35:59.999
they may be descended from. We\'ve pretty
much doubled our business every year.

00:36:00.000 --> 00:36:04.999
I think the industry is growing, I
mean we\'ve seen it explode just in the

00:36:05.000 --> 00:36:09.999
three plus years that we\'ve been in business. The
DNA tests aren\'t just for African-Americans,

00:36:10.000 --> 00:36:14.999
some two dozen companies are now
selling DNA, they say can trace

00:36:15.000 --> 00:36:19.999
anyone\'s ancestry back to
many regions of the world.

00:36:20.000 --> 00:36:24.999
But some in the scientific community are concerned that people
can be mislead about just what these tests actually reveal.

00:36:25.000 --> 00:36:29.999
My name is John, I\'m a
graduate student in sociology

00:36:30.000 --> 00:36:34.999
and my PhD distinction is on

00:36:35.000 --> 00:36:39.999
you guys taking this test. This is very new
stuff, a lot of people are interested in it.

00:36:40.000 --> 00:36:44.999
I just want to interview basically, I\'m going to interviewing before you get your
results, kind of figure out why you guys are doing this, why you wanted to find out,

00:36:45.000 --> 00:36:49.999
what your hopes and expectations are?
It scares me and like,

00:36:50.000 --> 00:36:54.999
so why would I want my DNA in the hands
of someone else? I got 91% European

00:36:55.000 --> 00:36:59.999
and then 9% Native American, so it\'s funny that, like it\'s kind
of backwards, I got to be more than I was expecting for me to.

00:37:00.000 --> 00:37:04.999
Just for me, that it come like, its
only 61% black is like, wow, you know…

00:37:05.000 --> 00:37:09.999
If my test results came out that I was 61%
white and 34% black, this in color still is

00:37:10.000 --> 00:37:14.999
not going to get me anything. I can walk around, like,
I\'m don\'t know with my results tattooed my arms,

00:37:15.000 --> 00:37:19.999
11% white, so when I walk into a bank to get a
loan, you know, I\'d have a 11% better chance

00:37:20.000 --> 00:37:24.999
to get a loan. You know, it\'s like…
So when you take the genetic test,

00:37:25.000 --> 00:37:29.999
it gets rid of like race, the only thing about
race is something to point out the difference.

00:37:30.000 --> 00:37:34.999
And they\'re saying, \"You are
85% white, you\'re 25% Asian.\"

00:37:35.000 --> 00:37:39.999
We can\'t know that in anyway that\'s
important, all we have is a prediction,

00:37:40.000 --> 00:37:44.999
a more probability so what I find
most troubling about this research

00:37:45.000 --> 00:37:49.999
is it gives a kind of the legitimacy of
science to the old classification system

00:37:50.000 --> 00:37:54.999
then you get into the
politics of racial profiling.

00:37:55.000 --> 00:38:03.000
[music]

00:38:05.000 --> 00:38:09.999
There are some fundamental rights

00:38:10.000 --> 00:38:14.999
that are at stake in society with respect
to all the genetic technologies.

00:38:15.000 --> 00:38:19.999
We\'ve already given away a number of
civil liberties because of the fear

00:38:20.000 --> 00:38:24.999
that people seem to be having, the
fear of immigrants, the fear of

00:38:25.000 --> 00:38:29.999
so-called insurgents. It\'s conceivable that

00:38:30.000 --> 00:38:35.000
something like this could happen.

00:38:40.000 --> 00:38:48.000
[sil.]

00:39:00.000 --> 00:39:04.999
Yeah, it could be used

00:39:05.000 --> 00:39:09.999
in job applications. Employers
don\'t want to hire people,

00:39:10.000 --> 00:39:14.999
they have their DNA, it might say, \"Well,
we think you\'re too sensitive to chemicals.

00:39:15.000 --> 00:39:19.999
We don\'t want to take the risk or some day

00:39:20.000 --> 00:39:24.999
you might contract the disease according to
this, it says that you\'re more likely to

00:39:25.000 --> 00:39:29.999
attract Alzheimer\'s disease. We don\'t
want to, we don\'t want to insure you

00:39:30.000 --> 00:39:35.000
and we don\'t want to hire you.\"

00:39:40.000 --> 00:39:44.999
When Darwin came up with

00:39:45.000 --> 00:39:49.999
his theory of evolution, the
social sciences grabbed onto it

00:39:50.000 --> 00:39:54.999
and the same thing is happening now in genetics.
So you can begin to see the process of

00:39:55.000 --> 00:39:59.999
selection going on, social
selection based upon DNA.

00:40:00.000 --> 00:40:05.000
[music]

00:40:15.000 --> 00:40:23.000
[music]

00:40:25.000 --> 00:40:29.999
The only people I suspect are
perhaps misguided libertarians who

00:40:30.000 --> 00:40:34.999
I will say it\'s a breach of human rights
but will, I suspect struggle to articulate

00:40:35.000 --> 00:40:39.999
why it\'s a breach of human rights, the
only people who would argue other people

00:40:40.000 --> 00:40:44.999
who are going to suffer if everyone\'s
DNA is on the database, the people

00:40:45.000 --> 00:40:49.999
who are going to cheat us, fraud us,
commit sex offenses, commit any offense,

00:40:50.000 --> 00:40:54.999
that\'d be a terrorist and they\'re the people
who really don\'t want the national database

00:40:55.000 --> 00:40:59.999
and for me it provides
protection and the protection of

00:41:00.000 --> 00:41:04.999
the majority out ways the
civil liberties of the few

00:41:05.000 --> 00:41:09.999
who would rather not have a comprehensive
database. Personally I think

00:41:10.000 --> 00:41:14.999
everybody should be sampled at birth and you
know, kept in a database, I mean that\'s one way

00:41:15.000 --> 00:41:19.999
to discover who\'s who if
something serious happened.

00:41:20.000 --> 00:41:24.999
[music]

00:41:25.000 --> 00:41:29.999
As more and more people are subject to these
tests, either knowingly or unknowingly it could be

00:41:30.000 --> 00:41:34.999
for purposes of immigration
or forensic information

00:41:35.000 --> 00:41:39.999
or just getting a sense of a person\'s
genetics for employment or insurance

00:41:40.000 --> 00:41:44.999
or even tracking in the school system, as more
of this information runs amok without proper

00:41:45.000 --> 00:41:49.999
control and privacy, a genetic discrimination is
going to loom large in the genetic rights movement

00:41:50.000 --> 00:41:54.999
will be a powerful, powerful movement in the 21st
century, people will demand their genetic privacy.

00:41:55.000 --> 00:41:59.999
[music]

00:42:00.000 --> 00:42:04.999
Fighting for the right to
genetic privacy is part of

00:42:05.000 --> 00:42:09.999
Donna Appell\'s daily life. Her daughter Lisa
suffers from a serious hereditary illness.

00:42:10.000 --> 00:42:14.999
The absence of any safeguards against the
use of genetic data in the US, means that

00:42:15.000 --> 00:42:19.999
Dona face this information may one day be
used against her family. Knowledge is power

00:42:20.000 --> 00:42:24.999
but if you don\'t protect that
power, then it\'s an unsafe tool.

00:42:25.000 --> 00:42:29.999
The whole issue of genetics I think is very
misunderstood by a lot of people. They don\'t see

00:42:30.000 --> 00:42:34.999
how it actually impacts them, they don\'t see
that family history is their genetic history.

00:42:35.000 --> 00:42:39.999
Did you have to do,

00:42:40.000 --> 00:42:44.999
did you make copies? I certainly
would enjoy the opportunity

00:42:45.000 --> 00:42:49.999
to sit at a table of
(inaudible) and discuss,

00:42:50.000 --> 00:42:54.999
you know, certainly there are ways
that I would not want DNA used.

00:42:55.000 --> 00:42:59.999
Washington, Capitol Hill, the
seat of America\'s Parliament.

00:43:00.000 --> 00:43:04.999
Donna has come here to raise awareness among
lawmakers about the potential abuse of

00:43:05.000 --> 00:43:09.999
genetic data. It\'s so depressing that not
only are you dealing with a genetic disorder

00:43:10.000 --> 00:43:14.999
but you\'re afraid of discrimination
because of it. You\'re afraid that,

00:43:15.000 --> 00:43:19.999
your children might not be able to get
the life insurance or be employee

00:43:20.000 --> 00:43:24.999
because they put… put their diagnosis down.

00:43:25.000 --> 00:43:29.999
Donna is a member of the Genetic Alliance, an umbrella
group for families, patients and health professionals

00:43:30.000 --> 00:43:34.999
that lobbies for law against genetic
discrimination. (inaudible).

00:43:35.000 --> 00:43:39.999
A final briefing before the meeting
with lawmakers in the maze of

00:43:40.000 --> 00:43:44.999
the corridors of power. Make sure you tell
your story, tell them why you\'re involved,

00:43:45.000 --> 00:43:49.999
tell them why it\'s important to you. You know,
we already have over 900 different genetic tests

00:43:50.000 --> 00:43:54.999
and the discoveries are really
the foundation for personalized

00:43:55.000 --> 00:43:59.999
and preventative medicine. Unfortunately, these
new technologies have also opened some door ways

00:44:00.000 --> 00:44:04.999
to genetic stimulation, thank you,

00:44:05.000 --> 00:44:09.999
particularly in health insurance and employment
the current path work of state and federal laws

00:44:10.000 --> 00:44:14.999
really is not adequate to give people
the assurances they need to go ahead

00:44:15.000 --> 00:44:19.999
and get tested in a lot of situations.
And as Brian said there\'s 900 tests,

00:44:20.000 --> 00:44:24.999
it\'s actually 1000 tests so you probably looked
last week. It was 10 tests 10 years ago,

00:44:25.000 --> 00:44:29.999
it\'s a thousand tests now, it\'s going to be
2,000, 5,000 whatever, so that\'s your ask today

00:44:30.000 --> 00:44:34.999
is to say I want this put on the floor, we need
this voted on now but the employer community,

00:44:35.000 --> 00:44:39.999
the Chamber of Commerce and the National
Manufacturers Association doesn\'t like this bill.

00:44:40.000 --> 00:44:44.999
Okay, 23 of 4, this way troops.

00:44:45.000 --> 00:44:49.999
So it\'s that way and that way and they\'re…
And they are just gonna loop this around…

00:44:50.000 --> 00:44:54.999
Around… 436, you ready? I\'m ready.

00:44:55.000 --> 00:44:59.999
You ready?

00:45:00.000 --> 00:45:04.999
And it\'s very difficult to feel comfortable
about educating people about genetics

00:45:05.000 --> 00:45:09.999
when there are no safeguards.
I\'m sorry to get so emotional

00:45:10.000 --> 00:45:14.999
but it\'s a big, big issue. It\'s good to hear
from people about what their concerns are,

00:45:15.000 --> 00:45:19.999
is how my boss knows what\'s important… Okay,
great. Yeah. Well, thank you very much.

00:45:20.000 --> 00:45:24.999
Thank you

00:45:25.000 --> 00:45:29.999
A bill that enclosed genetic discrimination
has been passed by the Senate. Looks good.

00:45:30.000 --> 00:45:34.999
But not yet approved by the
House of Representatives.

00:45:35.000 --> 00:45:39.999
But as genetic testing gets cheaper
and easier and more powerful,

00:45:40.000 --> 00:45:44.999
it\'s inevitable that everyone from employers
to the government is going to want to

00:45:45.000 --> 00:45:49.999
start using the information. We are completely
unprepared for the genomic revolution.

00:45:50.000 --> 00:45:54.999
We do not have laws emplace that govern
what can happen to all the state.

00:45:55.000 --> 00:46:03.000
[music]

00:46:10.000 --> 00:46:14.999
The public has no awareness how far along the
technology is. We already have companies

00:46:15.000 --> 00:46:19.999
all over the world that are developing these tasks
faster than they can even find a market for them.

00:46:20.000 --> 00:46:24.999
There has been little or no discussion
in the media, there\'s been virtually

00:46:25.000 --> 00:46:29.999
no discussion in the public policy circles, it\'s
not even on the radar screen, it\'s marginal.

00:46:30.000 --> 00:46:34.999
So here\'s an example of perhaps the most
dramatic technological intervention

00:46:35.000 --> 00:46:39.999
in the history of the human race into biology,
biology right to the blueprints of life

00:46:40.000 --> 00:46:44.999
and it\'s coming to us so quick and so
dramatic form we are completely unprepared.

00:46:45.000 --> 00:46:53.000
[music]

00:49:30.000 --> 00:49:34.999
The verdict of 500 Euro fine,

00:49:35.000 --> 00:49:39.999
the first prosecution under a new law
introduced by Nicolas Sarkozy in 2003

00:49:40.000 --> 00:49:44.999
that enables police to take genetic samples
from suspects of almost every imaginable crime.

00:49:45.000 --> 00:49:49.999
Since then, the national database
has swelled to 350,000 people.

00:49:50.000 --> 00:49:58.000
Benjamin is appealing
against his conviction.

00:50:40.000 --> 00:50:45.000
[sil.]

00:51:45.000 --> 00:51:49.999
[music]

00:51:50.000 --> 00:51:54.999
I can\'t think of a more powerful

00:51:55.000 --> 00:51:59.999
and dangerous tool in the hands of government
than knowing one\'s genetic information.

00:52:00.000 --> 00:52:04.999
In some ways this is the
ultimate exercise of control

00:52:05.000 --> 00:52:09.999
by the powers that be.

00:52:10.000 --> 00:52:14.999
Well, there\'s a kind of a doomsday clock for
privacy and if you think of midnight is doomsday,

00:52:15.000 --> 00:52:19.999
we\'re about five minutes
to mid night right now.

00:52:20.000 --> 00:52:25.000
[music]