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

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Herald Angel: Well, a lot of hackers in

this room, but I don't know if you knew
that, but but every being on this planet

has a source code. Even your cats, your
girlfriend, your boyfriend and your dog.

And the next speaker actually know how to
read the source code of human beings - the

human genome. Anna Müllner is a German
medical biotechnologist and she completed

her PhD in cancer research, but she is
also a science blogger, podcaster and

science slammer, known under the name
Adora Belle. She says something that's

quite interesting for me as a privacy
activist, she says genome sequencing

provides us with opportunities for medical
and biological science, but with

challenges in ethics and privacy. Please
give a round of applause to the next

speaker, Adora Belle!
applause

Adora Belle: Yeah, hello and welcome to my
talk about genetic codes and what they

tell us and everyone else. You might
realize it's a little different code than

most of you are used to, so at first I'd
like to introduce myself, to say who I am,

and how did I get here. Katasha already
told you some of that, so I can go quite

quickly.
I'm a biologist and I did my PhD in cancer

research, so I'm always interested about
cancer. In this talk will have a slight

influence by that. I'm blogging, I'm
podcasting, I'm talking about science and

slamming about science as well, but what
people might actually wonder is how did I

actually get here?
And you may remember a couple of years ago,

the Chaos Communication Club, Chaos
Computer Club, sorry, they stole the

fingerprint of Wolfgang Schäuble, because
he wanted to put the fingerprint of each

of us on our ID cards. And as you might
have realized the last time you renewed

your ID card, that actually happened. And
at the time I was in Scotland and I was

doing a course in forensics. And it's
actually me at a mock crime scene, so no

people were harmed but I was quite sweaty
under the suit so... and I realized that if

you take the glass of someone they drinks
from and you take a fingerprint you can

also take the genetic fingerprint and
actually

there's a whole genome of someone on
there. So to quickly summarize where you

can find genetic information: You can find
it just about anywhere. You can find it on

shed skin cells, in the saliva, and blood
and hair, in urine, and feces, and sperm, and

vaginal fluid, and we actually, we spread
it all the time, and for example, you have

it on your toothbrush, on your hairbrush,
on your keyboard, other personal items

like your cell phone, it's even on used
condoms and remember, there's probably also

the DNA of someone else on there, and also
you have it on other people. So if you

scratch someone you have their DNA. If you
lose hair and skin cells, if you touch

people you will transfer some of your
genetic information and also, like I said

with Wolfgang Schäuble, on glasses, on
letters that you lick to close them, on

cigarettes that you smoke and also some
part of your DNA, and this is quite

important, is in your relatives. Because
you share the genetic information to some

extent. So to quickly introduce the terms.
"Genetic fingerprints". Genetic

fingerprints actually provide no personal
information as such, besides the biological

gender, that's what you can actually check
for, but the other information is nonsense

information, that will not tell you
anything about the person. But it gives

you a positi... possibility to find
relatives since you share these

information, and it gives you the
possibility to reidentify people and it's

a unique sequence. And if you compare this
to a whole genome, which is becoming more

common now in research, you can find the
biological gender, of course, you can find

the ethnicity of a person, you can look at
genetic diseases, you can find out

something about the looks of the person,
and you can find out things about their

relatives as well. And as we do more
research, we will find that there will be

even more information to come and similar
to the fingerprint, you will be able to

reidentify people with this unique
sequence.

And in between the fingerprint
and the genome there will be a lot of

genetic profiles that have some kind of
reach depending on how far you want to

look, how deep you want to look.
And of course people said, this is quite

important information,
so they said the human genome will

actually be a final frontier in biology,
because it actually, it is our source code,

and this is what makes us us. And so they
started the Human Genome Project and said

if we sequence all this DNA, then we will
be able to reach kind of the Holy Grail

and they expected 100,000 genes and Bill
Gates then said, this would be the

language in which God created life, so
this was kind of a, yeah, a major goal

that they wanted to do. And then they
found out that there are only 19,000 to

20,000 genes, which is about the same
number as nematodes, so - that's a kind of

little worm - and four times more than the
bacteria in your gut, and so the leader of

the project, Craig Venter, whose own
genome was sequenced, he then said "we

don't know a shit", he said, we have no
idea what it means. And there they said

then, well, to find out more we actually
need to sequence more genomes. And this

does make sense, because, if you want to
find answers in the genome, then you have

to compare these genomes, and this then
lead to different projects, which are still

going on, like the 1000 Genomes project, the
10,000 autism genome project, the

100,000 genomes project in the UK,
and the 1,000,000 genomes project in the

US, and there are other genome projects,
like for example the Cancer Genome Project

and these all aim at a kind of
personalized medicine, so to compare your

DNA and then adjust treatment to your
genome. But as I will tell you soon, these

will not answer all the questions, because
DNA is much more about the regulation. Our

DNA is regulated, in a way that it's more
mobile and agile to respond, or, actually

the DNA is quite static, but the
regulation of the DNA actually made... makes

it extremely adaptive. And then there is
another thing, because

as I said, DNA is a code. It's similar to
your code that you do for a program, but

then how the user uses this program can
vary extremely widely, so you will find

that, even though the similar... the
information is similar in people, it might

look different in the person itself. So,
just to give you a quick impression about

how these interactions look like. These
are the products of the genome, or some of

the project... products, they're called
proteins and these interact with ... with

each other, and we will find that they have
all these interactions, all these

crossroads. One interacts with the next
and this then inhibits something else and

this is quite complex. But still, DNA
research does have its uses, so it will

provide us with valuable information, but
what you need to keep in mind is that is

it valuable for whom? So it could be used,
the whole genome sequencing could soon be

used instead of specific tests, because
it's becoming more and more cheaper all

the time and it would give us the
possibility to study specific genes in a

population, a genetic disease, inherited
cancer and genetic risks. And so, since I'm

a cancer researcher, I'm doing a quick X
course here. You can study single gene

diseases, which are usually, then, if you
have a mutation, and you find this in the

genome, the person will have the disease
with a very very high likelihood. There're

very rare cases, which this does not
happen but these are very rare, these

single gene diseases and also there are
some cancer genes. These are genes, that

we all have but if they are mutated they
will very likely lead to cancer in a very,

at a very early point in life. And you
might remember Angelina Jolie, who found a

cancer gene or gene in her, that was ...
that would lead to her having breast

cancer very early in life and so she had
her breasts removed and this also exists

for colon cancer and there are also
special syndromes, which lead to having

more or being more susceptible to cancer,
so these are also rare, actually. But it

is very likely, that in the Western world
we will die from two major causes,

one is cardiovascular disease and the
other is cancer. And when you think about

how to not get cancer I always say: It is
to be boring, so you need to have a

healthy lifestyle, so no smoking, less
drinking, staying fit and not eating too

much and avoiding radioactivity also plays
a big part and not go into the Sun without

sunscreen and to accept your screening
appointments with your doctor, but even

then I always say that cancer is mostly
bad luck, which is also the opinion of

many cancer researchers. And if you don't
get it, it just means that you have not

died of something else earlier. Because it
is a disease that comes with age and it

gets more likely to have this disease as
you become older and genetic risk factors

then play very little role, actually. So
then let's talk about the private genetic

sequencing companies that are sprouting
up everywhere. You might have heard of

23andme, which is a mail in genetic test,
which tests you for diseases and ethnicity

and they sequence over 500,000 gene
locations. There's a similar company

called ancestry, which just check your
ancestry, so it's a kind of ethnicity. And

there's the ingenia.com "surname project",
which compares your DNA to a male lineage

in the male lineage with the last name.
And also now we have whole genome

sequencing companies like the "Full
Genomes Cooperation", "Guardium", "Gene by

Gene" and even more. And you have to
realize that these companies will have

quite some genetic information stored. And
this is all nice and safe since the

government in America - where most of
these companies are - has repeatedly shown

to respect privacy. And of course that
won't change under the new president, I

think. so... already in 2010 Kashmir Hill
an author at Forbes, she wrote an article

called "Genome Hackers" where she showed
a lot of foresight. And - I'm just going

to quote here - "As gene tests become
common, possibilities for abuse will

intensify. Banks might not offer you a
mortgage if you were likely

to die before it was paid off. A pregnant
woman might secretly get DNA from her

lovers, so she knows who the father is.
Someone might check out a potential mate

for genetic flaws. Politicians might dig
up dirt on their rivals. Another question:

How far should law enforcement be allowed
to go? Should prosecutors be allowed to

subpoena a company's DNA database of
thousands of people if they suspect it

contains a match to a crime suspect? And
then a year later, Robert Langreth, he

referred to this article then said: "I
think this issue is just starting to

emerge. It will be a classic conflict
between scientists' desire for more data

and Americans' desire to keep sensitive
personal information private. If your DNA

is an easily accessible database,what are
the limits of what bureaucrats can do with

it?"
And what I find quite interesting here is

that he just makes this between scientists
and privacy oriented Americans, when we

think about it today it might be even more
like companies and people who don't really

think about privacy. And then we come a
little year, a couple of years later and

actually this is what then happens. So
23andme and ancestry were repeatedly asked

by law enforcement to hand over DNA
databases.

And they actually disclosed that they have
five DNA samples that they gave to the

cops and so one case for example, which
was not 23andme, but that's a filmmaker.

And there was a cold case and there was
DNA on the murder victim and they compared

it to a voluntary Y chromosome database or
so. A male lineage searched. And they

found out that the DNA on the murder
victim belonged to someone who was related

to someone in this database and that
someone actually had a son so they said,

well, then we test him. And so they found
filmmaker Usry and they tested him.

However the complete DNA then did not
match and he was cleared of the charge and

a statement by the privacy officer of
23andme kind of shows what we are getting

into because she said: "In the event we
are required by law to make a disclosure

we will notify the affected customer
through the contact information provided

to us, unless doing so would violate the
law or a court order."

So if your DNA becomes interesting in a
crime case they might tell you but they

might also not tell you and of course then
there's this "I've got nothing to hide and

the suspect was cleared so it will all be
in order after all" - just always remember

that there can be planted evidence.
Because, as I said, you shed your DNA

everywhere. And it's quite easy to obtain
your genetic information or place it at a

crime scene which might at least lead to
confusion. And there could be

circumstantial evidence so that a crime
happens somewhere where you're working or

where you are often. And always remember
the Heilbronn Phantom case, where they

found the DNA of a woman at completely
unconnected crime cases and this DNA was

later found in the swabs that they used to
test the evidence. Because the lady who

had produced these swabs had contaminated
the swabs and as you might remember this

led to a lot of confusion in the research
or in the criminal investigation. And if

you think that data is the new oil, it
truly is. For companies like 23andme who

have reportedly sold genetic data to
private companies and this was - of course

- for research. And they did it with 1.2
million genetic profiles that they have in

their database for parkinson research. And
there seemed to be more deals planned and

Anne Wojcicki of 23andMe, she said that
she wants the whole world's healthcare

data accessible to everyone. And of course
they do have a consent form and this is

signed by about 80% of customers, which
probably think "Well, if if I can help

with my DNA to do some research that's
fine." So, but do they really know what

they're getting into? And this is why I
would like to come to Genetic Sequencing

Privacy. And if we talk about privacy we
have to think about for whom is a genome

interesting. Since the 23andme test for
example is a mail-in tests so you could

send in the DNA of someone else and then
you could test someone else on their

genes. And this could be a prospective
partner - if they have

good DNA to have offspring with, maybe, or
might die early, or might die late. Family

members - if you want to know if your son
is really your son, your daughter is

really your daughter, test for paternity
and maybe if you want to know if you were

adopted. Insurance companies might be
quite interested in this data. Employers

could be interested. And prospective
parents could be interested, because you

can test - from just one cell - the genome
of an embryo for example. And who knows

who might else be interested, once more
information becomes accessible. And the

price is quite cheap actually to do. The
genetic test with 23andme is 200 dollars,

the price of a whole genome is now below
1,000 US dollars and the price will

decrease further. So we could be, should be
quite weary about what's going on. Because

for example 23andme blogs completely
openly about what they do. And they

connected a man to his biological father.
But this was not because his father had

entered his DNA in the database it was
because his cousin had. So someone put...

got tested by 23andme, 23andme said well
here is your cousin and then he found out

that this... that there could be his
father that he had been looking for. And

quite interestingly could be faith so
there's an African American woman who was

always interested in the Jewish faith and
then found out via 23andme that she is

related to the Ashkenazi Jewish tribe. And
today this information is well just

information, it doesn't really matter to
us.

But just remember if this information had
been available 70, 80 years earlier. And a

similar example could be Indian castes. So,
the caste system in India is outlawed. But

if you're still a traditionalist there,
you could test people to which caste they

belong to and discriminate against them.
And then there's another... another case

that just happened this year, where there
were plans of testing... gene testing at

the Kuwaiti border and they say, of
course, "This is anti-terrorism.", which

does not really make sense. Because you
need some DNA to compare and to find

terrorism and terrorists. There is no
"terror gene". And what could be the real

reason could be to keep out non-Kuwaitis,
because they have nomads, like beduines

that they don't really like. And that they
could also test family members and then

put them under pressure if they might have
an illegitimate child or if their wife has

been unfaithful just to put on some... yeah...
some kind of bad information about them.

And when I was doing research for the
talk I found quite interesting that a

blogger had his whole genome sequence and
he got a hard drive from Illumina and this

hard drive was actually encrypted and
wasn't encrypted by TrueCrypt. So this was

2 years ago and we now know that this
might have not been completely safe. And...

but we also have to take a... take up that
genetic data can be useful but we have to

have this compromise because it can be
misused.

And since it does have relevance in
research they are... there's a large

amount of genome stored for research
purposes at many institutes. And David

Goldstein said at the Institute of genome
medicine at Columbia University that there

is an irreversible drive toward obtaining
more and more complete genetic

information. And we are all going to be
sequenced the question is just who does it

and what is done with it. The challenge
will be to do good things with the data.

And if you want to do good things you have
to share the data and the genomes need to

be compared. And their data size is a
problem, because genomes can be extremely

large and depending on the coverage of the
data and of the genome and there's about

200 terabytes stored in Amazon Cloud for
the 1000 Genomes Project and there's also

now Google Genomics which wants to help
you with a big data of genomes.

And is that worth it? Well, maybe genome
research can be worth it for specific

purposes during research and to adjust
treatment of diseases, which works to a

point. But also in forensics. But then we
have to make up which limits. And for the

individual person genetic tests are
probably not necessary unless your doctor

advises you to. And you have to wonder if
your ancestry really matters that much to

you. And always keep in mind that this is
not just your information. It's also the

information of your relatives. And do you
really want to know what the test tells

you? Does it... If it comes up with a
genetic disease that cannot be treated -

do you want to know? And also if the DNA
gets out there, if your genetic

information is disclosed and you're
connected to it, you cannot change your

DNA. It will always be the same and you
can always be recognized by it.

So I'd like to thank you for all for your
attention and I hope you have some

questions for me.
Applause

Herald: Thank you so much for this talk. We
have six microphones here on the ground

floor. So if you want to... If you have a
question, you can line up there and we

still have some time left. There was one
question, at number 1.

Mic 2: Yeah, thank you for your talk and
for the information.

AH: No, number 1.
M2: Oh, sorry.

laughter
Mic 1: Hi! So you were talking about this

problem with people wanting to share
their... their genetic sequence for

science, but on the other side you have
the problem that the scope of that is not

obvious. Could you solve that by like
putting everything into public domain.

AB: Public domain of all genomes?
M1: Yeah. I don't know it's just a

thought.
AB: That would be kind of the post privacy

approach that you're all... hold... or
that the genomes of the world are all in

public domain like this Columbia professor
said, maybe. Well, that's not really

solving, that's just saying "Okay, if we
have the information of everyone

available, then no one can be
discriminated against because there's dirt

on anyone... maybe?" But I don't know if
that's the correct way, because we have to

make a decision for 7, 8 billion people on
the world, so...

Herald: Thank you for this question. We have
also some question from the internet.

Signal Angel: As you don't want to give
genetic information to corperations and

government is it possible to... to do the
test at home and how much would it cost?

AB: So... the testing of the DNA is done
with 23andme but you can do the... you can

disagree to share the information, so...
and then you'd have to hope that they do

it is... like such. Or as such. But that
doesn't really kno... But then I don't

know if it might still come up for police
investigation, still. So doing it at home

would be quite difficult, because the
sequencing machines are very cost... or

very costly and very difficult to use. But
there was talk about doing it with a

smartphone. To have a just a tiny device
who does this for you. But I have not

heard that this is now accessible yet.
Herald: Another question from number 3.

Mic 3: Hi, from your expert point of view,
have you been thinking of or are you in a

database for a bone marrow donations and
what do you think about that?

AB: Yeah I actually am and I did this when
I was 16 and wasn't really thinking about

it. I think now that this is... they will
probably not take your whole genome, but

they do have some information on me stored
and they might even have the probe still

stored. Like the blood that I gave at that
point. So they could still be doing - if

they were criminals - just test my genome
for that. So yes, but I am in the database

and also a blood donor. So my blood is
somewhere out there, all the time, and...

M3: And have you been thinking of revoking
it? Like... Maybe you can revoke your

database entry?
AB: I think I could... But for this... As

long as I don't know that they actually
take my genome out of it, as long as they

just store the information on my... yeah,
my major histocompatibility complex so

that's what they what they look at. But
they look at it genetically. I just hope

to do some good, but, yeah you're right.
They pro... they probably don't have my

whole genome as such, as information. But
they do have some genetic information and

they do have my probe stored, so...
Herald: Thank you for this question. There is

another question from the internet.
Signal angel: Do you think these kind of studies are

already carried out secretly from our
samples we give to health care orgs just

like blood giving?
AB: Well, well,... If they do it secretly,

then I don't... probably don't know about
it. But... So that's quite difficult to

answer. But it could be possible,
especially in regimes where there's no

democracy, for example. And but... I'm not
sure if this happens, because I don't have

that kind of information.
Herald: So, another question from number 2.

M2: Um, hello! I think there was a project
that, instead of working with a lot of

different genome sequence, try to work with
a single sequence and branching for

basically branching the little differences
for... for everybody. Would that solve the

privary... the privacy problems a bit?
AB: To just look at the differences to

other genomes?
M3: Yeah or would that there... we know

the research and stuff...
AB: Well this... So there is a format that

just checks for differences in the genome
which is... gives you a much smaller data

size, so you have your common genome and
then you have the data si... uhm... just

what... the delta of it. And... but this
will actually just give everything that is

not... well, not normal, so as a
probability term... than your... than your

DNA. So it's actually more condensed
information of what makes you... your

genetic code your genetic code. So that's
not really helping with the privacy.

M3: So it's a still... you can still
identify the single person,

AB: Yeah. Yeah.
M3: Okay thank you.

Herald: Yeah, that was, unfortunately, the
last question, because we are running out

of time. The next talk is waiting. Please
give again a warm applause to Adora Belle.

applause
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