WEBVTT
00:00:14.370 --> 00:00:15.910
music
Herald Angel: Well, a lot of hackers in
00:00:15.910 --> 00:00:21.910
this room, but I don't know if you knew
that, but but every being on this planet
00:00:21.910 --> 00:00:29.099
has a source code. Even your cats, your
girlfriend, your boyfriend and your dog.
00:00:29.099 --> 00:00:37.330
And the next speaker actually know how to
read the source code of human beings - the
00:00:37.330 --> 00:00:42.910
human genome. Anna Müllner is a German
medical biotechnologist and she completed
00:00:42.910 --> 00:00:49.289
her PhD in cancer research, but she is
also a science blogger, podcaster and
00:00:49.289 --> 00:00:56.949
science slammer, known under the name
Adora Belle. She says something that's
00:00:56.949 --> 00:01:02.361
quite interesting for me as a privacy
activist, she says genome sequencing
00:01:02.361 --> 00:01:07.530
provides us with opportunities for medical
and biological science, but with
00:01:07.530 --> 00:01:14.680
challenges in ethics and privacy. Please
give a round of applause to the next
00:01:14.680 --> 00:01:20.320
speaker, Adora Belle!
applause
00:01:24.010 --> 00:01:28.613
Adora Belle: Yeah, hello and welcome to my
talk about genetic codes and what they
00:01:28.613 --> 00:01:34.320
tell us and everyone else. You might
realize it's a little different code than
00:01:34.320 --> 00:01:41.240
most of you are used to, so at first I'd
like to introduce myself, to say who I am,
00:01:41.240 --> 00:01:46.540
and how did I get here. Katasha already
told you some of that, so I can go quite
00:01:46.540 --> 00:01:50.300
quickly.
I'm a biologist and I did my PhD in cancer
00:01:50.300 --> 00:01:55.740
research, so I'm always interested about
cancer. In this talk will have a slight
00:01:55.740 --> 00:02:01.910
influence by that. I'm blogging, I'm
podcasting, I'm talking about science and
00:02:01.910 --> 00:02:07.640
slamming about science as well, but what
people might actually wonder is how did I
00:02:07.640 --> 00:02:12.410
actually get here?
And you may remember a couple of years ago,
00:02:12.410 --> 00:02:21.950
the Chaos Communication Club, Chaos
Computer Club, sorry, they stole the
00:02:21.950 --> 00:02:25.799
fingerprint of Wolfgang Schäuble, because
he wanted to put the fingerprint of each
00:02:25.799 --> 00:02:30.830
of us on our ID cards. And as you might
have realized the last time you renewed
00:02:30.830 --> 00:02:37.230
your ID card, that actually happened. And
at the time I was in Scotland and I was
00:02:37.230 --> 00:02:44.689
doing a course in forensics. And it's
actually me at a mock crime scene, so no
00:02:44.689 --> 00:02:52.819
people were harmed but I was quite sweaty
under the suit so... and I realized that if
00:02:52.819 --> 00:02:57.760
you take the glass of someone they drinks
from and you take a fingerprint you can
00:02:57.760 --> 00:03:00.840
also take the genetic fingerprint and
actually
00:03:00.840 --> 00:03:08.799
there's a whole genome of someone on
there. So to quickly summarize where you
00:03:08.799 --> 00:03:15.409
can find genetic information: You can find
it just about anywhere. You can find it on
00:03:15.409 --> 00:03:22.549
shed skin cells, in the saliva, and blood
and hair, in urine, and feces, and sperm, and
00:03:22.549 --> 00:03:30.579
vaginal fluid, and we actually, we spread
it all the time, and for example, you have
00:03:30.579 --> 00:03:35.860
it on your toothbrush, on your hairbrush,
on your keyboard, other personal items
00:03:35.860 --> 00:03:40.959
like your cell phone, it's even on used
condoms and remember, there's probably also
00:03:40.959 --> 00:03:48.239
the DNA of someone else on there, and also
you have it on other people. So if you
00:03:48.239 --> 00:03:53.659
scratch someone you have their DNA. If you
lose hair and skin cells, if you touch
00:03:53.659 --> 00:04:01.700
people you will transfer some of your
genetic information and also, like I said
00:04:01.700 --> 00:04:07.980
with Wolfgang Schäuble, on glasses, on
letters that you lick to close them, on
00:04:07.980 --> 00:04:15.090
cigarettes that you smoke and also some
part of your DNA, and this is quite
00:04:15.090 --> 00:04:20.769
important, is in your relatives. Because
you share the genetic information to some
00:04:20.769 --> 00:04:29.000
extent. So to quickly introduce the terms.
"Genetic fingerprints". Genetic
00:04:29.000 --> 00:04:34.240
fingerprints actually provide no personal
information as such, besides the biological
00:04:34.240 --> 00:04:38.460
gender, that's what you can actually check
for, but the other information is nonsense
00:04:38.460 --> 00:04:43.710
information, that will not tell you
anything about the person. But it gives
00:04:43.710 --> 00:04:49.460
you a positi... possibility to find
relatives since you share these
00:04:49.460 --> 00:04:56.150
information, and it gives you the
possibility to reidentify people and it's
00:04:56.150 --> 00:05:01.640
a unique sequence. And if you compare this
to a whole genome, which is becoming more
00:05:01.640 --> 00:05:08.740
common now in research, you can find the
biological gender, of course, you can find
00:05:08.740 --> 00:05:13.449
the ethnicity of a person, you can look at
genetic diseases, you can find out
00:05:13.449 --> 00:05:17.830
something about the looks of the person,
and you can find out things about their
00:05:17.830 --> 00:05:24.020
relatives as well. And as we do more
research, we will find that there will be
00:05:24.020 --> 00:05:30.460
even more information to come and similar
to the fingerprint, you will be able to
00:05:30.460 --> 00:05:35.020
reidentify people with this unique
sequence.
00:05:35.020 --> 00:05:39.490
And in between the fingerprint
and the genome there will be a lot of
00:05:39.490 --> 00:05:46.370
genetic profiles that have some kind of
reach depending on how far you want to
00:05:46.370 --> 00:05:52.620
look, how deep you want to look.
And of course people said, this is quite
00:05:52.620 --> 00:05:57.539
important information,
so they said the human genome will
00:05:57.539 --> 00:06:02.330
actually be a final frontier in biology,
because it actually, it is our source code,
00:06:02.330 --> 00:06:11.849
and this is what makes us us. And so they
started the Human Genome Project and said
00:06:11.849 --> 00:06:19.330
if we sequence all this DNA, then we will
be able to reach kind of the Holy Grail
00:06:19.330 --> 00:06:28.410
and they expected 100,000 genes and Bill
Gates then said, this would be the
00:06:28.410 --> 00:06:36.760
language in which God created life, so
this was kind of a, yeah, a major goal
00:06:36.760 --> 00:06:42.699
that they wanted to do. And then they
found out that there are only 19,000 to
00:06:42.699 --> 00:06:46.770
20,000 genes, which is about the same
number as nematodes, so - that's a kind of
00:06:46.770 --> 00:06:57.099
little worm - and four times more than the
bacteria in your gut, and so the leader of
00:06:57.099 --> 00:07:02.650
the project, Craig Venter, whose own
genome was sequenced, he then said "we
00:07:02.650 --> 00:07:08.969
don't know a shit", he said, we have no
idea what it means. And there they said
00:07:08.969 --> 00:07:14.669
then, well, to find out more we actually
need to sequence more genomes. And this
00:07:14.669 --> 00:07:19.290
does make sense, because, if you want to
find answers in the genome, then you have
00:07:19.290 --> 00:07:25.680
to compare these genomes, and this then
lead to different projects, which are still
00:07:25.680 --> 00:07:33.520
going on, like the 1000 Genomes project, the
10,000 autism genome project, the
00:07:33.520 --> 00:07:38.949
100,000 genomes project in the UK,
and the 1,000,000 genomes project in the
00:07:38.949 --> 00:07:43.949
US, and there are other genome projects,
like for example the Cancer Genome Project
00:07:43.949 --> 00:07:49.250
and these all aim at a kind of
personalized medicine, so to compare your
00:07:49.250 --> 00:07:57.590
DNA and then adjust treatment to your
genome. But as I will tell you soon, these
00:07:57.590 --> 00:08:07.180
will not answer all the questions, because
DNA is much more about the regulation. Our
00:08:07.180 --> 00:08:16.169
DNA is regulated, in a way that it's more
mobile and agile to respond, or, actually
00:08:16.169 --> 00:08:21.650
the DNA is quite static, but the
regulation of the DNA actually made... makes
00:08:21.650 --> 00:08:27.780
it extremely adaptive. And then there is
another thing, because
00:08:27.780 --> 00:08:35.309
as I said, DNA is a code. It's similar to
your code that you do for a program, but
00:08:35.309 --> 00:08:42.969
then how the user uses this program can
vary extremely widely, so you will find
00:08:42.969 --> 00:08:48.500
that, even though the similar... the
information is similar in people, it might
00:08:48.500 --> 00:08:54.910
look different in the person itself. So,
just to give you a quick impression about
00:08:54.910 --> 00:09:00.529
how these interactions look like. These
are the products of the genome, or some of
00:09:00.529 --> 00:09:07.590
the project... products, they're called
proteins and these interact with ... with
00:09:07.590 --> 00:09:13.610
each other, and we will find that they have
all these interactions, all these
00:09:13.610 --> 00:09:18.920
crossroads. One interacts with the next
and this then inhibits something else and
00:09:18.920 --> 00:09:27.330
this is quite complex. But still, DNA
research does have its uses, so it will
00:09:27.330 --> 00:09:32.500
provide us with valuable information, but
what you need to keep in mind is that is
00:09:32.500 --> 00:09:38.730
it valuable for whom? So it could be used,
the whole genome sequencing could soon be
00:09:38.730 --> 00:09:43.589
used instead of specific tests, because
it's becoming more and more cheaper all
00:09:43.589 --> 00:09:47.970
the time and it would give us the
possibility to study specific genes in a
00:09:47.970 --> 00:09:57.190
population, a genetic disease, inherited
cancer and genetic risks. And so, since I'm
00:09:57.190 --> 00:10:04.190
a cancer researcher, I'm doing a quick X
course here. You can study single gene
00:10:04.190 --> 00:10:10.320
diseases, which are usually, then, if you
have a mutation, and you find this in the
00:10:10.320 --> 00:10:15.900
genome, the person will have the disease
with a very very high likelihood. There're
00:10:15.900 --> 00:10:20.070
very rare cases, which this does not
happen but these are very rare, these
00:10:20.070 --> 00:10:27.590
single gene diseases and also there are
some cancer genes. These are genes, that
00:10:27.590 --> 00:10:33.760
we all have but if they are mutated they
will very likely lead to cancer in a very,
00:10:33.760 --> 00:10:39.260
at a very early point in life. And you
might remember Angelina Jolie, who found a
00:10:39.260 --> 00:10:44.850
cancer gene or gene in her, that was ...
that would lead to her having breast
00:10:44.850 --> 00:10:51.910
cancer very early in life and so she had
her breasts removed and this also exists
00:10:51.910 --> 00:10:57.070
for colon cancer and there are also
special syndromes, which lead to having
00:10:57.070 --> 00:11:10.210
more or being more susceptible to cancer,
so these are also rare, actually. But it
00:11:10.210 --> 00:11:14.850
is very likely, that in the Western world
we will die from two major causes,
00:11:14.850 --> 00:11:23.440
one is cardiovascular disease and the
other is cancer. And when you think about
00:11:23.440 --> 00:11:29.780
how to not get cancer I always say: It is
to be boring, so you need to have a
00:11:29.780 --> 00:11:36.199
healthy lifestyle, so no smoking, less
drinking, staying fit and not eating too
00:11:36.199 --> 00:11:43.950
much and avoiding radioactivity also plays
a big part and not go into the Sun without
00:11:43.950 --> 00:11:52.350
sunscreen and to accept your screening
appointments with your doctor, but even
00:11:52.350 --> 00:11:57.670
then I always say that cancer is mostly
bad luck, which is also the opinion of
00:11:57.670 --> 00:12:03.839
many cancer researchers. And if you don't
get it, it just means that you have not
00:12:03.839 --> 00:12:08.149
died of something else earlier. Because it
is a disease that comes with age and it
00:12:08.149 --> 00:12:16.769
gets more likely to have this disease as
you become older and genetic risk factors
00:12:16.769 --> 00:12:23.720
then play very little role, actually. So
then let's talk about the private genetic
00:12:23.720 --> 00:12:29.240
sequencing companies that are sprouting
up everywhere. You might have heard of
00:12:29.240 --> 00:12:38.240
23andme, which is a mail in genetic test,
which tests you for diseases and ethnicity
00:12:38.240 --> 00:12:44.079
and they sequence over 500,000 gene
locations. There's a similar company
00:12:44.079 --> 00:12:50.820
called ancestry, which just check your
ancestry, so it's a kind of ethnicity. And
00:12:50.820 --> 00:12:58.410
there's the ingenia.com "surname project",
which compares your DNA to a male lineage
00:12:58.410 --> 00:13:05.389
in the male lineage with the last name.
And also now we have whole genome
00:13:05.389 --> 00:13:09.200
sequencing companies like the "Full
Genomes Cooperation", "Guardium", "Gene by
00:13:09.200 --> 00:13:15.790
Gene" and even more. And you have to
realize that these companies will have
00:13:15.790 --> 00:13:21.750
quite some genetic information stored. And
this is all nice and safe since the
00:13:21.750 --> 00:13:26.050
government in America - where most of
these companies are - has repeatedly shown
00:13:26.050 --> 00:13:32.290
to respect privacy. And of course that
won't change under the new president, I
00:13:32.290 --> 00:13:42.579
think. so... already in 2010 Kashmir Hill
an author at Forbes, she wrote an article
00:13:42.579 --> 00:13:49.029
called "Genome Hackers" where she showed
a lot of foresight. And - I'm just going
00:13:49.029 --> 00:13:54.279
to quote here - "As gene tests become
common, possibilities for abuse will
00:13:54.279 --> 00:13:57.949
intensify. Banks might not offer you a
mortgage if you were likely
00:13:57.949 --> 00:14:03.480
to die before it was paid off. A pregnant
woman might secretly get DNA from her
00:14:03.480 --> 00:14:07.870
lovers, so she knows who the father is.
Someone might check out a potential mate
00:14:07.870 --> 00:14:13.790
for genetic flaws. Politicians might dig
up dirt on their rivals. Another question:
00:14:13.790 --> 00:14:18.149
How far should law enforcement be allowed
to go? Should prosecutors be allowed to
00:14:18.149 --> 00:14:23.910
subpoena a company's DNA database of
thousands of people if they suspect it
00:14:23.910 --> 00:14:33.040
contains a match to a crime suspect? And
then a year later, Robert Langreth, he
00:14:33.040 --> 00:14:37.459
referred to this article then said: "I
think this issue is just starting to
00:14:37.459 --> 00:14:42.029
emerge. It will be a classic conflict
between scientists' desire for more data
00:14:42.029 --> 00:14:47.980
and Americans' desire to keep sensitive
personal information private. If your DNA
00:14:47.980 --> 00:14:52.110
is an easily accessible database,what are
the limits of what bureaucrats can do with
00:14:52.110 --> 00:14:54.680
it?"
And what I find quite interesting here is
00:14:54.680 --> 00:15:00.829
that he just makes this between scientists
and privacy oriented Americans, when we
00:15:00.829 --> 00:15:06.690
think about it today it might be even more
like companies and people who don't really
00:15:06.690 --> 00:15:16.050
think about privacy. And then we come a
little year, a couple of years later and
00:15:16.050 --> 00:15:23.680
actually this is what then happens. So
23andme and ancestry were repeatedly asked
00:15:23.680 --> 00:15:28.790
by law enforcement to hand over DNA
databases.
00:15:28.790 --> 00:15:34.529
And they actually disclosed that they have
five DNA samples that they gave to the
00:15:34.529 --> 00:15:48.730
cops and so one case for example, which
was not 23andme, but that's a filmmaker.
00:15:48.730 --> 00:15:55.319
And there was a cold case and there was
DNA on the murder victim and they compared
00:15:55.319 --> 00:16:01.769
it to a voluntary Y chromosome database or
so. A male lineage searched. And they
00:16:01.769 --> 00:16:07.629
found out that the DNA on the murder
victim belonged to someone who was related
00:16:07.629 --> 00:16:14.920
to someone in this database and that
someone actually had a son so they said,
00:16:14.920 --> 00:16:22.420
well, then we test him. And so they found
filmmaker Usry and they tested him.
00:16:22.420 --> 00:16:30.660
However the complete DNA then did not
match and he was cleared of the charge and
00:16:30.660 --> 00:16:36.200
a statement by the privacy officer of
23andme kind of shows what we are getting
00:16:36.200 --> 00:16:42.579
into because she said: "In the event we
are required by law to make a disclosure
00:16:42.579 --> 00:16:46.790
we will notify the affected customer
through the contact information provided
00:16:46.790 --> 00:16:51.779
to us, unless doing so would violate the
law or a court order."
00:16:51.779 --> 00:16:57.829
So if your DNA becomes interesting in a
crime case they might tell you but they
00:16:57.829 --> 00:17:04.579
might also not tell you and of course then
there's this "I've got nothing to hide and
00:17:04.579 --> 00:17:10.640
the suspect was cleared so it will all be
in order after all" - just always remember
00:17:10.640 --> 00:17:15.170
that there can be planted evidence.
Because, as I said, you shed your DNA
00:17:15.170 --> 00:17:19.390
everywhere. And it's quite easy to obtain
your genetic information or place it at a
00:17:19.390 --> 00:17:24.929
crime scene which might at least lead to
confusion. And there could be
00:17:24.929 --> 00:17:29.640
circumstantial evidence so that a crime
happens somewhere where you're working or
00:17:29.640 --> 00:17:36.441
where you are often. And always remember
the Heilbronn Phantom case, where they
00:17:36.441 --> 00:17:45.081
found the DNA of a woman at completely
unconnected crime cases and this DNA was
00:17:45.081 --> 00:17:53.860
later found in the swabs that they used to
test the evidence. Because the lady who
00:17:53.860 --> 00:18:00.419
had produced these swabs had contaminated
the swabs and as you might remember this
00:18:00.419 --> 00:18:09.100
led to a lot of confusion in the research
or in the criminal investigation. And if
00:18:09.100 --> 00:18:13.870
you think that data is the new oil, it
truly is. For companies like 23andme who
00:18:13.870 --> 00:18:19.279
have reportedly sold genetic data to
private companies and this was - of course
00:18:19.279 --> 00:18:25.669
- for research. And they did it with 1.2
million genetic profiles that they have in
00:18:25.669 --> 00:18:31.940
their database for parkinson research. And
there seemed to be more deals planned and
00:18:31.940 --> 00:18:39.330
Anne Wojcicki of 23andMe, she said that
she wants the whole world's healthcare
00:18:39.330 --> 00:18:46.970
data accessible to everyone. And of course
they do have a consent form and this is
00:18:46.970 --> 00:18:54.840
signed by about 80% of customers, which
probably think "Well, if if I can help
00:18:54.840 --> 00:19:00.640
with my DNA to do some research that's
fine." So, but do they really know what
00:19:00.640 --> 00:19:06.690
they're getting into? And this is why I
would like to come to Genetic Sequencing
00:19:06.690 --> 00:19:14.210
Privacy. And if we talk about privacy we
have to think about for whom is a genome
00:19:14.210 --> 00:19:23.059
interesting. Since the 23andme test for
example is a mail-in tests so you could
00:19:23.059 --> 00:19:29.060
send in the DNA of someone else and then
you could test someone else on their
00:19:29.060 --> 00:19:32.700
genes. And this could be a prospective
partner - if they have
00:19:32.700 --> 00:19:42.470
good DNA to have offspring with, maybe, or
might die early, or might die late. Family
00:19:42.470 --> 00:19:45.330
members - if you want to know if your son
is really your son, your daughter is
00:19:45.330 --> 00:19:51.210
really your daughter, test for paternity
and maybe if you want to know if you were
00:19:51.210 --> 00:19:58.320
adopted. Insurance companies might be
quite interested in this data. Employers
00:19:58.320 --> 00:20:04.320
could be interested. And prospective
parents could be interested, because you
00:20:04.320 --> 00:20:12.320
can test - from just one cell - the genome
of an embryo for example. And who knows
00:20:12.320 --> 00:20:19.799
who might else be interested, once more
information becomes accessible. And the
00:20:19.799 --> 00:20:23.600
price is quite cheap actually to do. The
genetic test with 23andme is 200 dollars,
00:20:23.600 --> 00:20:30.130
the price of a whole genome is now below
1,000 US dollars and the price will
00:20:30.130 --> 00:20:39.120
decrease further. So we could be, should be
quite weary about what's going on. Because
00:20:39.120 --> 00:20:46.050
for example 23andme blogs completely
openly about what they do. And they
00:20:46.050 --> 00:20:50.760
connected a man to his biological father.
But this was not because his father had
00:20:50.760 --> 00:20:58.460
entered his DNA in the database it was
because his cousin had. So someone put...
00:20:58.460 --> 00:21:03.570
got tested by 23andme, 23andme said well
here is your cousin and then he found out
00:21:03.570 --> 00:21:11.180
that this... that there could be his
father that he had been looking for. And
00:21:11.180 --> 00:21:15.909
quite interestingly could be faith so
there's an African American woman who was
00:21:15.909 --> 00:21:20.820
always interested in the Jewish faith and
then found out via 23andme that she is
00:21:20.820 --> 00:21:31.760
related to the Ashkenazi Jewish tribe. And
today this information is well just
00:21:31.760 --> 00:21:33.520
information, it doesn't really matter to
us.
00:21:33.520 --> 00:21:42.000
But just remember if this information had
been available 70, 80 years earlier. And a
00:21:42.000 --> 00:21:49.640
similar example could be Indian castes. So,
the caste system in India is outlawed. But
00:21:49.640 --> 00:21:55.669
if you're still a traditionalist there,
you could test people to which caste they
00:21:55.669 --> 00:22:03.950
belong to and discriminate against them.
And then there's another... another case
00:22:03.950 --> 00:22:09.950
that just happened this year, where there
were plans of testing... gene testing at
00:22:09.950 --> 00:22:14.940
the Kuwaiti border and they say, of
course, "This is anti-terrorism.", which
00:22:14.940 --> 00:22:20.090
does not really make sense. Because you
need some DNA to compare and to find
00:22:20.090 --> 00:22:28.450
terrorism and terrorists. There is no
"terror gene". And what could be the real
00:22:28.450 --> 00:22:35.070
reason could be to keep out non-Kuwaitis,
because they have nomads, like beduines
00:22:35.070 --> 00:22:42.990
that they don't really like. And that they
could also test family members and then
00:22:42.990 --> 00:22:47.679
put them under pressure if they might have
an illegitimate child or if their wife has
00:22:47.679 --> 00:22:56.659
been unfaithful just to put on some... yeah...
some kind of bad information about them.
00:22:56.659 --> 00:23:04.590
And when I was doing research for the
talk I found quite interesting that a
00:23:04.590 --> 00:23:09.490
blogger had his whole genome sequence and
he got a hard drive from Illumina and this
00:23:09.490 --> 00:23:15.360
hard drive was actually encrypted and
wasn't encrypted by TrueCrypt. So this was
00:23:15.360 --> 00:23:22.760
2 years ago and we now know that this
might have not been completely safe. And...
00:23:22.760 --> 00:23:30.710
but we also have to take a... take up that
genetic data can be useful but we have to
00:23:30.710 --> 00:23:34.290
have this compromise because it can be
misused.
00:23:34.290 --> 00:23:39.309
And since it does have relevance in
research they are... there's a large
00:23:39.309 --> 00:23:45.210
amount of genome stored for research
purposes at many institutes. And David
00:23:45.210 --> 00:23:51.490
Goldstein said at the Institute of genome
medicine at Columbia University that there
00:23:51.490 --> 00:23:54.890
is an irreversible drive toward obtaining
more and more complete genetic
00:23:54.890 --> 00:23:59.529
information. And we are all going to be
sequenced the question is just who does it
00:23:59.529 --> 00:24:03.080
and what is done with it. The challenge
will be to do good things with the data.
00:24:03.080 --> 00:24:08.250
And if you want to do good things you have
to share the data and the genomes need to
00:24:08.250 --> 00:24:13.090
be compared. And their data size is a
problem, because genomes can be extremely
00:24:13.090 --> 00:24:19.770
large and depending on the coverage of the
data and of the genome and there's about
00:24:19.770 --> 00:24:26.110
200 terabytes stored in Amazon Cloud for
the 1000 Genomes Project and there's also
00:24:26.110 --> 00:24:32.180
now Google Genomics which wants to help
you with a big data of genomes.
00:24:32.180 --> 00:24:38.169
And is that worth it? Well, maybe genome
research can be worth it for specific
00:24:38.169 --> 00:24:43.100
purposes during research and to adjust
treatment of diseases, which works to a
00:24:43.100 --> 00:24:52.640
point. But also in forensics. But then we
have to make up which limits. And for the
00:24:52.640 --> 00:24:57.850
individual person genetic tests are
probably not necessary unless your doctor
00:24:57.850 --> 00:25:05.750
advises you to. And you have to wonder if
your ancestry really matters that much to
00:25:05.750 --> 00:25:12.760
you. And always keep in mind that this is
not just your information. It's also the
00:25:12.760 --> 00:25:19.480
information of your relatives. And do you
really want to know what the test tells
00:25:19.480 --> 00:25:23.909
you? Does it... If it comes up with a
genetic disease that cannot be treated -
00:25:23.909 --> 00:25:30.880
do you want to know? And also if the DNA
gets out there, if your genetic
00:25:30.880 --> 00:25:36.110
information is disclosed and you're
connected to it, you cannot change your
00:25:36.110 --> 00:25:42.340
DNA. It will always be the same and you
can always be recognized by it.
00:25:42.340 --> 00:25:47.500
So I'd like to thank you for all for your
attention and I hope you have some
00:25:47.500 --> 00:25:53.420
questions for me.
Applause
00:25:53.420 --> 00:26:04.789
Herald: Thank you so much for this talk. We
have six microphones here on the ground
00:26:04.789 --> 00:26:11.260
floor. So if you want to... If you have a
question, you can line up there and we
00:26:11.260 --> 00:26:19.230
still have some time left. There was one
question, at number 1.
00:26:19.230 --> 00:26:21.930
Mic 2: Yeah, thank you for your talk and
for the information.
00:26:21.930 --> 00:26:24.890
AH: No, number 1.
M2: Oh, sorry.
00:26:24.890 --> 00:26:30.330
laughter
Mic 1: Hi! So you were talking about this
00:26:30.330 --> 00:26:37.549
problem with people wanting to share
their... their genetic sequence for
00:26:37.549 --> 00:26:43.929
science, but on the other side you have
the problem that the scope of that is not
00:26:43.929 --> 00:26:50.370
obvious. Could you solve that by like
putting everything into public domain.
00:26:50.370 --> 00:26:55.090
AB: Public domain of all genomes?
M1: Yeah. I don't know it's just a
00:26:55.090 --> 00:26:57.090
thought.
AB: That would be kind of the post privacy
00:26:57.090 --> 00:27:00.090
approach that you're all... hold... or
that the genomes of the world are all in
00:27:00.090 --> 00:27:08.350
public domain like this Columbia professor
said, maybe. Well, that's not really
00:27:08.350 --> 00:27:12.059
solving, that's just saying "Okay, if we
have the information of everyone
00:27:12.059 --> 00:27:17.409
available, then no one can be
discriminated against because there's dirt
00:27:17.409 --> 00:27:23.330
on anyone... maybe?" But I don't know if
that's the correct way, because we have to
00:27:23.330 --> 00:27:28.720
make a decision for 7, 8 billion people on
the world, so...
00:27:28.720 --> 00:27:34.769
Herald: Thank you for this question. We have
also some question from the internet.
00:27:34.769 --> 00:27:40.269
Signal Angel: As you don't want to give
genetic information to corperations and
00:27:40.269 --> 00:27:46.320
government is it possible to... to do the
test at home and how much would it cost?
00:27:46.320 --> 00:27:52.730
AB: So... the testing of the DNA is done
with 23andme but you can do the... you can
00:27:52.730 --> 00:27:59.019
disagree to share the information, so...
and then you'd have to hope that they do
00:27:59.019 --> 00:28:05.160
it is... like such. Or as such. But that
doesn't really kno... But then I don't
00:28:05.160 --> 00:28:12.059
know if it might still come up for police
investigation, still. So doing it at home
00:28:12.059 --> 00:28:20.300
would be quite difficult, because the
sequencing machines are very cost... or
00:28:20.300 --> 00:28:27.020
very costly and very difficult to use. But
there was talk about doing it with a
00:28:27.020 --> 00:28:32.150
smartphone. To have a just a tiny device
who does this for you. But I have not
00:28:32.150 --> 00:28:38.710
heard that this is now accessible yet.
Herald: Another question from number 3.
00:28:38.710 --> 00:28:44.039
Mic 3: Hi, from your expert point of view,
have you been thinking of or are you in a
00:28:44.039 --> 00:28:48.390
database for a bone marrow donations and
what do you think about that?
00:28:48.390 --> 00:28:53.270
AB: Yeah I actually am and I did this when
I was 16 and wasn't really thinking about
00:28:53.270 --> 00:29:01.890
it. I think now that this is... they will
probably not take your whole genome, but
00:29:01.890 --> 00:29:06.919
they do have some information on me stored
and they might even have the probe still
00:29:06.919 --> 00:29:14.750
stored. Like the blood that I gave at that
point. So they could still be doing - if
00:29:14.750 --> 00:29:22.000
they were criminals - just test my genome
for that. So yes, but I am in the database
00:29:22.000 --> 00:29:27.900
and also a blood donor. So my blood is
somewhere out there, all the time, and...
00:29:27.900 --> 00:29:33.049
M3: And have you been thinking of revoking
it? Like... Maybe you can revoke your
00:29:33.049 --> 00:29:38.919
database entry?
AB: I think I could... But for this... As
00:29:38.919 --> 00:29:41.740
long as I don't know that they actually
take my genome out of it, as long as they
00:29:41.740 --> 00:29:50.300
just store the information on my... yeah,
my major histocompatibility complex so
00:29:50.300 --> 00:29:56.100
that's what they what they look at. But
they look at it genetically. I just hope
00:29:56.100 --> 00:30:01.809
to do some good, but, yeah you're right.
They pro... they probably don't have my
00:30:01.809 --> 00:30:07.070
whole genome as such, as information. But
they do have some genetic information and
00:30:07.070 --> 00:30:14.890
they do have my probe stored, so...
Herald: Thank you for this question. There is
00:30:14.890 --> 00:30:19.610
another question from the internet.
Signal angel: Do you think these kind of studies are
00:30:19.610 --> 00:30:24.399
already carried out secretly from our
samples we give to health care orgs just
00:30:24.399 --> 00:30:29.470
like blood giving?
AB: Well, well,... If they do it secretly,
00:30:29.470 --> 00:30:36.190
then I don't... probably don't know about
it. But... So that's quite difficult to
00:30:36.190 --> 00:30:43.210
answer. But it could be possible,
especially in regimes where there's no
00:30:43.210 --> 00:30:51.980
democracy, for example. And but... I'm not
sure if this happens, because I don't have
00:30:51.980 --> 00:30:59.740
that kind of information.
Herald: So, another question from number 2.
00:30:59.740 --> 00:31:07.100
M2: Um, hello! I think there was a project
that, instead of working with a lot of
00:31:07.100 --> 00:31:14.500
different genome sequence, try to work with
a single sequence and branching for
00:31:14.500 --> 00:31:20.250
basically branching the little differences
for... for everybody. Would that solve the
00:31:20.250 --> 00:31:25.210
privary... the privacy problems a bit?
AB: To just look at the differences to
00:31:25.210 --> 00:31:27.730
other genomes?
M3: Yeah or would that there... we know
00:31:27.730 --> 00:31:32.419
the research and stuff...
AB: Well this... So there is a format that
00:31:32.419 --> 00:31:37.200
just checks for differences in the genome
which is... gives you a much smaller data
00:31:37.200 --> 00:31:42.639
size, so you have your common genome and
then you have the data si... uhm... just
00:31:42.639 --> 00:31:48.260
what... the delta of it. And... but this
will actually just give everything that is
00:31:48.260 --> 00:31:57.260
not... well, not normal, so as a
probability term... than your... than your
00:31:57.260 --> 00:32:02.960
DNA. So it's actually more condensed
information of what makes you... your
00:32:02.960 --> 00:32:06.460
genetic code your genetic code. So that's
not really helping with the privacy.
00:32:06.460 --> 00:32:09.730
M3: So it's a still... you can still
identify the single person,
00:32:09.730 --> 00:32:12.730
AB: Yeah. Yeah.
M3: Okay thank you.
00:32:12.730 --> 00:32:15.820
Herald: Yeah, that was, unfortunately, the
last question, because we are running out
00:32:15.820 --> 00:32:20.769
of time. The next talk is waiting. Please
give again a warm applause to Adora Belle.
00:32:20.769 --> 00:32:24.699
applause
music
00:32:24.699 --> 00:32:48.000
subtitles created by c3subtitles.de
in the year 2017. Join, and help us!