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Genetic Codes and what they tell us – and everyone else (33c3)

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    music
    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
  • 25:31 - 25:36
    information is disclosed and you're
    connected to it, you cannot change your
  • 25:36 - 25:42
    DNA. It will always be the same and you
    can always be recognized by it.
  • 25:42 - 25:48
    So I'd like to thank you for all for your
    attention and I hope you have some
  • 25:48 - 25:53
    questions for me.
    Applause
  • 25:53 - 26:05
    Herald: Thank you so much for this talk. We
    have six microphones here on the ground
  • 26:05 - 26:11
    floor. So if you want to... If you have a
    question, you can line up there and we
  • 26:11 - 26:19
    still have some time left. There was one
    question, at number 1.
  • 26:19 - 26:22
    Mic 2: Yeah, thank you for your talk and
    for the information.
  • 26:22 - 26:25
    AH: No, number 1.
    M2: Oh, sorry.
  • 26:25 - 26:30
    laughter
    Mic 1: Hi! So you were talking about this
  • 26:30 - 26:38
    problem with people wanting to share
    their... their genetic sequence for
  • 26:38 - 26:44
    science, but on the other side you have
    the problem that the scope of that is not
  • 26:44 - 26:50
    obvious. Could you solve that by like
    putting everything into public domain.
  • 26:50 - 26:55
    AB: Public domain of all genomes?
    M1: Yeah. I don't know it's just a
  • 26:55 - 26:57
    thought.
    AB: That would be kind of the post privacy
  • 26:57 - 27:00
    approach that you're all... hold... or
    that the genomes of the world are all in
  • 27:00 - 27:08
    public domain like this Columbia professor
    said, maybe. Well, that's not really
  • 27:08 - 27:12
    solving, that's just saying "Okay, if we
    have the information of everyone
  • 27:12 - 27:17
    available, then no one can be
    discriminated against because there's dirt
  • 27:17 - 27:23
    on anyone... maybe?" But I don't know if
    that's the correct way, because we have to
  • 27:23 - 27:29
    make a decision for 7, 8 billion people on
    the world, so...
  • 27:29 - 27:35
    Herald: Thank you for this question. We have
    also some question from the internet.
  • 27:35 - 27:40
    Signal Angel: As you don't want to give
    genetic information to corperations and
  • 27:40 - 27:46
    government is it possible to... to do the
    test at home and how much would it cost?
  • 27:46 - 27:53
    AB: So... the testing of the DNA is done
    with 23andme but you can do the... you can
  • 27:53 - 27:59
    disagree to share the information, so...
    and then you'd have to hope that they do
  • 27:59 - 28:05
    it is... like such. Or as such. But that
    doesn't really kno... But then I don't
  • 28:05 - 28:12
    know if it might still come up for police
    investigation, still. So doing it at home
  • 28:12 - 28:20
    would be quite difficult, because the
    sequencing machines are very cost... or
  • 28:20 - 28:27
    very costly and very difficult to use. But
    there was talk about doing it with a
  • 28:27 - 28:32
    smartphone. To have a just a tiny device
    who does this for you. But I have not
  • 28:32 - 28:39
    heard that this is now accessible yet.
    Herald: Another question from number 3.
  • 28:39 - 28:44
    Mic 3: Hi, from your expert point of view,
    have you been thinking of or are you in a
  • 28:44 - 28:48
    database for a bone marrow donations and
    what do you think about that?
  • 28:48 - 28:53
    AB: Yeah I actually am and I did this when
    I was 16 and wasn't really thinking about
  • 28:53 - 29:02
    it. I think now that this is... they will
    probably not take your whole genome, but
  • 29:02 - 29:07
    they do have some information on me stored
    and they might even have the probe still
  • 29:07 - 29:15
    stored. Like the blood that I gave at that
    point. So they could still be doing - if
  • 29:15 - 29:22
    they were criminals - just test my genome
    for that. So yes, but I am in the database
  • 29:22 - 29:28
    and also a blood donor. So my blood is
    somewhere out there, all the time, and...
  • 29:28 - 29:33
    M3: And have you been thinking of revoking
    it? Like... Maybe you can revoke your
  • 29:33 - 29:39
    database entry?
    AB: I think I could... But for this... As
  • 29:39 - 29:42
    long as I don't know that they actually
    take my genome out of it, as long as they
  • 29:42 - 29:50
    just store the information on my... yeah,
    my major histocompatibility complex so
  • 29:50 - 29:56
    that's what they what they look at. But
    they look at it genetically. I just hope
  • 29:56 - 30:02
    to do some good, but, yeah you're right.
    They pro... they probably don't have my
  • 30:02 - 30:07
    whole genome as such, as information. But
    they do have some genetic information and
  • 30:07 - 30:15
    they do have my probe stored, so...
    Herald: Thank you for this question. There is
  • 30:15 - 30:20
    another question from the internet.
    Signal angel: Do you think these kind of studies are
  • 30:20 - 30:24
    already carried out secretly from our
    samples we give to health care orgs just
  • 30:24 - 30:29
    like blood giving?
    AB: Well, well,... If they do it secretly,
  • 30:29 - 30:36
    then I don't... probably don't know about
    it. But... So that's quite difficult to
  • 30:36 - 30:43
    answer. But it could be possible,
    especially in regimes where there's no
  • 30:43 - 30:52
    democracy, for example. And but... I'm not
    sure if this happens, because I don't have
  • 30:52 - 31:00
    that kind of information.
    Herald: So, another question from number 2.
  • 31:00 - 31:07
    M2: Um, hello! I think there was a project
    that, instead of working with a lot of
  • 31:07 - 31:14
    different genome sequence, try to work with
    a single sequence and branching for
  • 31:14 - 31:20
    basically branching the little differences
    for... for everybody. Would that solve the
  • 31:20 - 31:25
    privary... the privacy problems a bit?
    AB: To just look at the differences to
  • 31:25 - 31:28
    other genomes?
    M3: Yeah or would that there... we know
  • 31:28 - 31:32
    the research and stuff...
    AB: Well this... So there is a format that
  • 31:32 - 31:37
    just checks for differences in the genome
    which is... gives you a much smaller data
  • 31:37 - 31:43
    size, so you have your common genome and
    then you have the data si... uhm... just
  • 31:43 - 31:48
    what... the delta of it. And... but this
    will actually just give everything that is
  • 31:48 - 31:57
    not... well, not normal, so as a
    probability term... than your... than your
  • 31:57 - 32:03
    DNA. So it's actually more condensed
    information of what makes you... your
  • 32:03 - 32:06
    genetic code your genetic code. So that's
    not really helping with the privacy.
  • 32:06 - 32:10
    M3: So it's a still... you can still
    identify the single person,
  • 32:10 - 32:13
    AB: Yeah. Yeah.
    M3: Okay thank you.
  • 32:13 - 32:16
    Herald: Yeah, that was, unfortunately, the
    last question, because we are running out
  • 32:16 - 32:21
    of time. The next talk is waiting. Please
    give again a warm applause to Adora Belle.
  • 32:21 - 32:25
    applause
    music
  • 32:25 - 32:48
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Title:
Genetic Codes and what they tell us – and everyone else (33c3)
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Video Language:
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Duration:
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