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Herald Angel: Well, a lot of hackers in
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this room, but I don't know if you knew
that, but but every being on this planet
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has a source code. Even your cats, your
girlfriend, your boyfriend and your dog.
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And the next speaker actually know how to
read the source code of human beings - the
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human genome. Anna Müllner is a German
medical biotechnologist and she completed
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her PhD in cancer research, but she is
also a science blogger, podcaster and
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science slammer, known under the name
Adora Belle. She says something that's
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quite interesting for me as a privacy
activist, she says genome sequencing
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provides us with opportunities for medical
and biological science, but with
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challenges in ethics and privacy. Please
give a round of applause to the next
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speaker, Adora Belle!
applause
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Adora Belle: Yeah, hello and welcome to my
talk about genetic codes and what they
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tell us and everyone else. You might
realize it's a little different code than
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most of you are used to, so at first I'd
like to introduce myself, to say who I am,
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and how did I get here. Katasha already
told you some of that, so I can go quite
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quickly.
I'm a biologist and I did my PhD in cancer
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research, so I'm always interested about
cancer. In this talk will have a slight
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influence by that. I'm blogging, I'm
podcasting, I'm talking about science and
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slamming about science as well, but what
people might actually wonder is how did I
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actually get here?
And you may remember a couple of years ago,
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the Chaos Communication Club, Chaos
Computer Club, sorry, they stole the
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fingerprint of Wolfgang Schäuble, because
he wanted to put the fingerprint of each
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of us on our ID cards. And as you might
have realized the last time you renewed
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your ID card, that actually happened. And
at the time I was in Scotland and I was
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doing a course in forensics. And it's
actually me at a mock crime scene, so no
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people were harmed but I was quite sweaty
under the suit so... and I realized that if
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you take the glass of someone they drinks
from and you take a fingerprint you can
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also take the genetic fingerprint and
actually
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there's a whole genome of someone on
there. So to quickly summarize where you
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can find genetic information: You can find
it just about anywhere. You can find it on
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shed skin cells, in the saliva, and blood
and hair, in urine, and feces, and sperm, and
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vaginal fluid, and we actually, we spread
it all the time, and for example, you have
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it on your toothbrush, on your hairbrush,
on your keyboard, other personal items
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like your cell phone, it's even on used
condoms and remember, there's probably also
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the DNA of someone else on there, and also
you have it on other people. So if you
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scratch someone you have their DNA. If you
lose hair and skin cells, if you touch
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people you will transfer some of your
genetic information and also, like I said
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with Wolfgang Schäuble, on glasses, on
letters that you lick to close them, on
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cigarettes that you smoke and also some
part of your DNA, and this is quite
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important, is in your relatives. Because
you share the genetic information to some
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extent. So to quickly introduce the terms.
"Genetic fingerprints". Genetic
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fingerprints actually provide no personal
information as such, besides the biological
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gender, that's what you can actually check
for, but the other information is nonsense
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information, that will not tell you
anything about the person. But it gives
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you a positi... possibility to find
relatives since you share these
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information, and it gives you the
possibility to reidentify people and it's
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a unique sequence. And if you compare this
to a whole genome, which is becoming more
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common now in research, you can find the
biological gender, of course, you can find
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the ethnicity of a person, you can look at
genetic diseases, you can find out
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something about the looks of the person,
and you can find out things about their
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relatives as well. And as we do more
research, we will find that there will be
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even more information to come and similar
to the fingerprint, you will be able to
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reidentify people with this unique
sequence.
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And in between the fingerprint
and the genome there will be a lot of
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genetic profiles that have some kind of
reach depending on how far you want to
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look, how deep you want to look.
And of course people said, this is quite
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important information,
so they said the human genome will
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actually be a final frontier in biology,
because it actually, it is our source code,
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and this is what makes us us. And so they
started the Human Genome Project and said
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if we sequence all this DNA, then we will
be able to reach kind of the Holy Grail
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and they expected 100,000 genes and Bill
Gates then said, this would be the
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language in which God created life, so
this was kind of a, yeah, a major goal
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that they wanted to do. And then they
found out that there are only 19,000 to
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20,000 genes, which is about the same
number as nematodes, so - that's a kind of
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little worm - and four times more than the
bacteria in your gut, and so the leader of
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the project, Craig Venter, whose own
genome was sequenced, he then said "we
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don't know a shit", he said, we have no
idea what it means. And there they said
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then, well, to find out more we actually
need to sequence more genomes. And this
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does make sense, because, if you want to
find answers in the genome, then you have
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to compare these genomes, and this then
lead to different projects, which are still
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going on, like the 1000 Genomes project, the
10,000 autism genome project, the
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100,000 genomes project in the UK,
and the 1,000,000 genomes project in the
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US, and there are other genome projects,
like for example the Cancer Genome Project
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and these all aim at a kind of
personalized medicine, so to compare your
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DNA and then adjust treatment to your
genome. But as I will tell you soon, these
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will not answer all the questions, because
DNA is much more about the regulation. Our
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DNA is regulated, in a way that it's more
mobile and agile to respond, or, actually
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the DNA is quite static, but the
regulation of the DNA actually made... makes
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it extremely adaptive. And then there is
another thing, because
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as I said, DNA is a code. It's similar to
your code that you do for a program, but
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then how the user uses this program can
vary extremely widely, so you will find
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that, even though the similar... the
information is similar in people, it might
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look different in the person itself. So,
just to give you a quick impression about
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how these interactions look like. These
are the products of the genome, or some of
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the project... products, they're called
proteins and these interact with ... with
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each other, and we will find that they have
all these interactions, all these
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crossroads. One interacts with the next
and this then inhibits something else and
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this is quite complex. But still, DNA
research does have its uses, so it will
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provide us with valuable information, but
what you need to keep in mind is that is
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it valuable for whom? So it could be used,
the whole genome sequencing could soon be
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used instead of specific tests, because
it's becoming more and more cheaper all
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the time and it would give us the
possibility to study specific genes in a
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population, a genetic disease, inherited
cancer and genetic risks. And so, since I'm
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a cancer researcher, I'm doing a quick X
course here. You can study single gene
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diseases, which are usually, then, if you
have a mutation, and you find this in the
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genome, the person will have the disease
with a very very high likelihood. There're
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very rare cases, which this does not
happen but these are very rare, these
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single gene diseases and also there are
some cancer genes. These are genes, that
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we all have but if they are mutated they
will very likely lead to cancer in a very,
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at a very early point in life. And you
might remember Angelina Jolie, who found a
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cancer gene or gene in her, that was ...
that would lead to her having breast
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cancer very early in life and so she had
her breasts removed and this also exists
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for colon cancer and there are also
special syndromes, which lead to having
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more or being more susceptible to cancer,
so these are also rare, actually. But it
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is very likely, that in the Western world
we will die from two major causes,
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one is cardiovascular disease and the
other is cancer. And when you think about
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how to not get cancer I always say: It is
to be boring, so you need to have a
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healthy lifestyle, so no smoking, less
drinking, staying fit and not eating too
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much and avoiding radioactivity also plays
a big part and not go into the Sun without
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sunscreen and to accept your screening
appointments with your doctor, but even
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then I always say that cancer is mostly
bad luck, which is also the opinion of
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many cancer researchers. And if you don't
get it, it just means that you have not
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died of something else earlier. Because it
is a disease that comes with age and it
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gets more likely to have this disease as
you become older and genetic risk factors
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then play very little role, actually. So
then let's talk about the private genetic
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sequencing companies that are sprouting
up everywhere. You might have heard of
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23andme, which is a mail in genetic test,
which tests you for diseases and ethnicity
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and they sequence over 500,000 gene
locations. There's a similar company
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called ancestry, which just check your
ancestry, so it's a kind of ethnicity. And
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there's the ingenia.com "surname project",
which compares your DNA to a male lineage
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in the male lineage with the last name.
And also now we have whole genome
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sequencing companies like the "Full
Genomes Cooperation", "Guardium", "Gene by
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Gene" and even more. And you have to
realize that these companies will have
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quite some genetic information stored. And
this is all nice and safe since the
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government in America - where most of
these companies are - has repeatedly shown
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to respect privacy. And of course that
won't change under the new president, I
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think. so... already in 2010 Kashmir Hill
an author at Forbes, she wrote an article
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called "Genome Hackers" where she showed
a lot of foresight. And - I'm just going
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to quote here - "As gene tests become
common, possibilities for abuse will
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intensify. Banks might not offer you a
mortgage if you were likely
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to die before it was paid off. A pregnant
woman might secretly get DNA from her
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lovers, so she knows who the father is.
Someone might check out a potential mate
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for genetic flaws. Politicians might dig
up dirt on their rivals. Another question:
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How far should law enforcement be allowed
to go? Should prosecutors be allowed to
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subpoena a company's DNA database of
thousands of people if they suspect it
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contains a match to a crime suspect? And
then a year later, Robert Langreth, he
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referred to this article then said: "I
think this issue is just starting to
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emerge. It will be a classic conflict
between scientists' desire for more data
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and Americans' desire to keep sensitive
personal information private. If your DNA
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is an easily accessible database,what are
the limits of what bureaucrats can do with
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it?"
And what I find quite interesting here is
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that he just makes this between scientists
and privacy oriented Americans, when we
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think about it today it might be even more
like companies and people who don't really
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think about privacy. And then we come a
little year, a couple of years later and
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actually this is what then happens. So
23andme and ancestry were repeatedly asked
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by law enforcement to hand over DNA
databases.
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And they actually disclosed that they have
five DNA samples that they gave to the
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cops and so one case for example, which
was not 23andme, but that's a filmmaker.
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And there was a cold case and there was
DNA on the murder victim and they compared
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it to a voluntary Y chromosome database or
so. A male lineage searched. And they
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found out that the DNA on the murder
victim belonged to someone who was related
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to someone in this database and that
someone actually had a son so they said,
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well, then we test him. And so they found
filmmaker Usry and they tested him.
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However the complete DNA then did not
match and he was cleared of the charge and
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a statement by the privacy officer of
23andme kind of shows what we are getting
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into because she said: "In the event we
are required by law to make a disclosure
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we will notify the affected customer
through the contact information provided
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to us, unless doing so would violate the
law or a court order."
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So if your DNA becomes interesting in a
crime case they might tell you but they
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might also not tell you and of course then
there's this "I've got nothing to hide and
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the suspect was cleared so it will all be
in order after all" - just always remember
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that there can be planted evidence.
Because, as I said, you shed your DNA
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everywhere. And it's quite easy to obtain
your genetic information or place it at a
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crime scene which might at least lead to
confusion. And there could be
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circumstantial evidence so that a crime
happens somewhere where you're working or
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where you are often. And always remember
the Heilbronn Phantom case, where they
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found the DNA of a woman at completely
unconnected crime cases and this DNA was
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later found in the swabs that they used to
test the evidence. Because the lady who
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had produced these swabs had contaminated
the swabs and as you might remember this
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led to a lot of confusion in the research
or in the criminal investigation. And if
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you think that data is the new oil, it
truly is. For companies like 23andme who
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have reportedly sold genetic data to
private companies and this was - of course
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- for research. And they did it with 1.2
million genetic profiles that they have in
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their database for parkinson research. And
there seemed to be more deals planned and
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Anne Wojcicki of 23andMe, she said that
she wants the whole world's healthcare
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data accessible to everyone. And of course
they do have a consent form and this is
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signed by about 80% of customers, which
probably think "Well, if if I can help
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with my DNA to do some research that's
fine." So, but do they really know what
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they're getting into? And this is why I
would like to come to Genetic Sequencing
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Privacy. And if we talk about privacy we
have to think about for whom is a genome
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interesting. Since the 23andme test for
example is a mail-in tests so you could
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send in the DNA of someone else and then
you could test someone else on their
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genes. And this could be a prospective
partner - if they have
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good DNA to have offspring with, maybe, or
might die early, or might die late. Family
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members - if you want to know if your son
is really your son, your daughter is
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really your daughter, test for paternity
and maybe if you want to know if you were
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adopted. Insurance companies might be
quite interested in this data. Employers
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could be interested. And prospective
parents could be interested, because you
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can test - from just one cell - the genome
of an embryo for example. And who knows
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who might else be interested, once more
information becomes accessible. And the
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price is quite cheap actually to do. The
genetic test with 23andme is 200 dollars,
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the price of a whole genome is now below
1,000 US dollars and the price will
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decrease further. So we could be, should be
quite weary about what's going on. Because
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for example 23andme blogs completely
openly about what they do. And they
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connected a man to his biological father.
But this was not because his father had
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entered his DNA in the database it was
because his cousin had. So someone put...
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got tested by 23andme, 23andme said well
here is your cousin and then he found out
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that this... that there could be his
father that he had been looking for. And
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quite interestingly could be faith so
there's an African American woman who was
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always interested in the Jewish faith and
then found out via 23andme that she is
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related to the Ashkenazi Jewish tribe. And
today this information is well just
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information, it doesn't really matter to
us.
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But just remember if this information had
been available 70, 80 years earlier. And a
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similar example could be Indian castes. So,
the caste system in India is outlawed. But
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if you're still a traditionalist there,
you could test people to which caste they
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belong to and discriminate against them.
And then there's another... another case
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that just happened this year, where there
were plans of testing... gene testing at
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the Kuwaiti border and they say, of
course, "This is anti-terrorism.", which
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does not really make sense. Because you
need some DNA to compare and to find
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terrorism and terrorists. There is no
"terror gene". And what could be the real
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reason could be to keep out non-Kuwaitis,
because they have nomads, like beduines
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that they don't really like. And that they
could also test family members and then
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put them under pressure if they might have
an illegitimate child or if their wife has
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been unfaithful just to put on some... yeah...
some kind of bad information about them.
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And when I was doing research for the
talk I found quite interesting that a
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blogger had his whole genome sequence and
he got a hard drive from Illumina and this
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hard drive was actually encrypted and
wasn't encrypted by TrueCrypt. So this was
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2 years ago and we now know that this
might have not been completely safe. And...
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but we also have to take a... take up that
genetic data can be useful but we have to
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have this compromise because it can be
misused.
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And since it does have relevance in
research they are... there's a large
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amount of genome stored for research
purposes at many institutes. And David
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Goldstein said at the Institute of genome
medicine at Columbia University that there
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is an irreversible drive toward obtaining
more and more complete genetic
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information. And we are all going to be
sequenced the question is just who does it
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and what is done with it. The challenge
will be to do good things with the data.
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And if you want to do good things you have
to share the data and the genomes need to
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be compared. And their data size is a
problem, because genomes can be extremely
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large and depending on the coverage of the
data and of the genome and there's about
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200 terabytes stored in Amazon Cloud for
the 1000 Genomes Project and there's also
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now Google Genomics which wants to help
you with a big data of genomes.
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And is that worth it? Well, maybe genome
research can be worth it for specific
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purposes during research and to adjust
treatment of diseases, which works to a
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point. But also in forensics. But then we
have to make up which limits. And for the
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individual person genetic tests are
probably not necessary unless your doctor
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advises you to. And you have to wonder if
your ancestry really matters that much to
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you. And always keep in mind that this is
not just your information. It's also the
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information of your relatives. And do you
really want to know what the test tells
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you? Does it... If it comes up with a
genetic disease that cannot be treated -
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do you want to know? And also if the DNA
gets out there, if your genetic
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information is disclosed and you're
connected to it, you cannot change your
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DNA. It will always be the same and you
can always be recognized by it.
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So I'd like to thank you for all for your
attention and I hope you have some
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questions for me.
Applause
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Herald: Thank you so much for this talk. We
have six microphones here on the ground
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floor. So if you want to... If you have a
question, you can line up there and we
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still have some time left. There was one
question, at number 1.
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Mic 2: Yeah, thank you for your talk and
for the information.
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AH: No, number 1.
M2: Oh, sorry.
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laughter
Mic 1: Hi! So you were talking about this
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problem with people wanting to share
their... their genetic sequence for
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science, but on the other side you have
the problem that the scope of that is not
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obvious. Could you solve that by like
putting everything into public domain.
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AB: Public domain of all genomes?
M1: Yeah. I don't know it's just a
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thought.
AB: That would be kind of the post privacy
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approach that you're all... hold... or
that the genomes of the world are all in
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public domain like this Columbia professor
said, maybe. Well, that's not really
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solving, that's just saying "Okay, if we
have the information of everyone
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available, then no one can be
discriminated against because there's dirt
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on anyone... maybe?" But I don't know if
that's the correct way, because we have to
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make a decision for 7, 8 billion people on
the world, so...
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Herald: Thank you for this question. We have
also some question from the internet.
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Signal Angel: As you don't want to give
genetic information to corperations and
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government is it possible to... to do the
test at home and how much would it cost?
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AB: So... the testing of the DNA is done
with 23andme but you can do the... you can
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disagree to share the information, so...
and then you'd have to hope that they do
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it is... like such. Or as such. But that
doesn't really kno... But then I don't
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know if it might still come up for police
investigation, still. So doing it at home
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would be quite difficult, because the
sequencing machines are very cost... or
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very costly and very difficult to use. But
there was talk about doing it with a
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smartphone. To have a just a tiny device
who does this for you. But I have not
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heard that this is now accessible yet.
Herald: Another question from number 3.
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Mic 3: Hi, from your expert point of view,
have you been thinking of or are you in a
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database for a bone marrow donations and
what do you think about that?
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AB: Yeah I actually am and I did this when
I was 16 and wasn't really thinking about
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it. I think now that this is... they will
probably not take your whole genome, but
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they do have some information on me stored
and they might even have the probe still
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stored. Like the blood that I gave at that
point. So they could still be doing - if
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they were criminals - just test my genome
for that. So yes, but I am in the database
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and also a blood donor. So my blood is
somewhere out there, all the time, and...
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M3: And have you been thinking of revoking
it? Like... Maybe you can revoke your
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database entry?
AB: I think I could... But for this... As
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long as I don't know that they actually
take my genome out of it, as long as they
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just store the information on my... yeah,
my major histocompatibility complex so
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that's what they what they look at. But
they look at it genetically. I just hope
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to do some good, but, yeah you're right.
They pro... they probably don't have my
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whole genome as such, as information. But
they do have some genetic information and
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they do have my probe stored, so...
Herald: Thank you for this question. There is
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another question from the internet.
Signal angel: Do you think these kind of studies are
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already carried out secretly from our
samples we give to health care orgs just
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like blood giving?
AB: Well, well,... If they do it secretly,
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then I don't... probably don't know about
it. But... So that's quite difficult to
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answer. But it could be possible,
especially in regimes where there's no
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democracy, for example. And but... I'm not
sure if this happens, because I don't have
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that kind of information.
Herald: So, another question from number 2.
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M2: Um, hello! I think there was a project
that, instead of working with a lot of
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different genome sequence, try to work with
a single sequence and branching for
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basically branching the little differences
for... for everybody. Would that solve the
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privary... the privacy problems a bit?
AB: To just look at the differences to
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other genomes?
M3: Yeah or would that there... we know
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the research and stuff...
AB: Well this... So there is a format that
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just checks for differences in the genome
which is... gives you a much smaller data
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size, so you have your common genome and
then you have the data si... uhm... just
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what... the delta of it. And... but this
will actually just give everything that is
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not... well, not normal, so as a
probability term... than your... than your
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DNA. So it's actually more condensed
information of what makes you... your
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genetic code your genetic code. So that's
not really helping with the privacy.
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M3: So it's a still... you can still
identify the single person,
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AB: Yeah. Yeah.
M3: Okay thank you.
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Herald: Yeah, that was, unfortunately, the
last question, because we are running out
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of time. The next talk is waiting. Please
give again a warm applause to Adora Belle.
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applause
music
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