0:00:14.370,0:00:15.910
music[br]Herald Angel: Well, a lot of hackers in
0:00:15.910,0:00:21.910
this room, but I don't know if you knew[br]that, but but every being on this planet
0:00:21.910,0:00:29.099
has a source code. Even your cats, your[br]girlfriend, your boyfriend and your dog.
0:00:29.099,0:00:37.330
And the next speaker actually know how to[br]read the source code of human beings - the
0:00:37.330,0:00:42.910
human genome. Anna Müllner is a German[br]medical biotechnologist and she completed
0:00:42.910,0:00:49.289
her PhD in cancer research, but she is[br]also a science blogger, podcaster and
0:00:49.289,0:00:56.949
science slammer, known under the name[br]Adora Belle. She says something that's
0:00:56.949,0:01:02.361
quite interesting for me as a privacy[br]activist, she says genome sequencing
0:01:02.361,0:01:07.530
provides us with opportunities for medical[br]and biological science, but with
0:01:07.530,0:01:14.680
challenges in ethics and privacy. Please[br]give a round of applause to the next
0:01:14.680,0:01:20.320
speaker, Adora Belle![br]applause
0:01:24.010,0:01:28.613
Adora Belle: Yeah, hello and welcome to my[br]talk about genetic codes and what they
0:01:28.613,0:01:34.320
tell us and everyone else. You might[br]realize it's a little different code than
0:01:34.320,0:01:41.240
most of you are used to, so at first I'd[br]like to introduce myself, to say who I am,
0:01:41.240,0:01:46.540
and how did I get here. Katasha already[br]told you some of that, so I can go quite
0:01:46.540,0:01:50.300
quickly.[br]I'm a biologist and I did my PhD in cancer
0:01:50.300,0:01:55.740
research, so I'm always interested about[br]cancer. In this talk will have a slight
0:01:55.740,0:02:01.910
influence by that. I'm blogging, I'm[br]podcasting, I'm talking about science and
0:02:01.910,0:02:07.640
slamming about science as well, but what[br]people might actually wonder is how did I
0:02:07.640,0:02:12.410
actually get here?[br]And you may remember a couple of years ago,
0:02:12.410,0:02:21.950
the Chaos Communication Club, Chaos[br]Computer Club, sorry, they stole the
0:02:21.950,0:02:25.799
fingerprint of Wolfgang Schäuble, because[br]he wanted to put the fingerprint of each
0:02:25.799,0:02:30.830
of us on our ID cards. And as you might[br]have realized the last time you renewed
0:02:30.830,0:02:37.230
your ID card, that actually happened. And[br]at the time I was in Scotland and I was
0:02:37.230,0:02:44.689
doing a course in forensics. And it's[br]actually me at a mock crime scene, so no
0:02:44.689,0:02:52.819
people were harmed but I was quite sweaty[br]under the suit so... and I realized that if
0:02:52.819,0:02:57.760
you take the glass of someone they drinks[br]from and you take a fingerprint you can
0:02:57.760,0:03:00.840
also take the genetic fingerprint and[br]actually
0:03:00.840,0:03:08.799
there's a whole genome of someone on[br]there. So to quickly summarize where you
0:03:08.799,0:03:15.409
can find genetic information: You can find[br]it just about anywhere. You can find it on
0:03:15.409,0:03:22.549
shed skin cells, in the saliva, and blood[br]and hair, in urine, and feces, and sperm, and
0:03:22.549,0:03:30.579
vaginal fluid, and we actually, we spread[br]it all the time, and for example, you have
0:03:30.579,0:03:35.860
it on your toothbrush, on your hairbrush,[br]on your keyboard, other personal items
0:03:35.860,0:03:40.959
like your cell phone, it's even on used[br]condoms and remember, there's probably also
0:03:40.959,0:03:48.239
the DNA of someone else on there, and also[br]you have it on other people. So if you
0:03:48.239,0:03:53.659
scratch someone you have their DNA. If you[br]lose hair and skin cells, if you touch
0:03:53.659,0:04:01.700
people you will transfer some of your[br]genetic information and also, like I said
0:04:01.700,0:04:07.980
with Wolfgang Schäuble, on glasses, on[br]letters that you lick to close them, on
0:04:07.980,0:04:15.090
cigarettes that you smoke and also some[br]part of your DNA, and this is quite
0:04:15.090,0:04:20.769
important, is in your relatives. Because[br]you share the genetic information to some
0:04:20.769,0:04:29.000
extent. So to quickly introduce the terms.[br]"Genetic fingerprints". Genetic
0:04:29.000,0:04:34.240
fingerprints actually provide no personal[br]information as such, besides the biological
0:04:34.240,0:04:38.460
gender, that's what you can actually check[br]for, but the other information is nonsense
0:04:38.460,0:04:43.710
information, that will not tell you[br]anything about the person. But it gives
0:04:43.710,0:04:49.460
you a positi... possibility to find[br]relatives since you share these
0:04:49.460,0:04:56.150
information, and it gives you the[br]possibility to reidentify people and it's
0:04:56.150,0:05:01.640
a unique sequence. And if you compare this[br]to a whole genome, which is becoming more
0:05:01.640,0:05:08.740
common now in research, you can find the[br]biological gender, of course, you can find
0:05:08.740,0:05:13.449
the ethnicity of a person, you can look at[br]genetic diseases, you can find out
0:05:13.449,0:05:17.830
something about the looks of the person,[br]and you can find out things about their
0:05:17.830,0:05:24.020
relatives as well. And as we do more[br]research, we will find that there will be
0:05:24.020,0:05:30.460
even more information to come and similar[br]to the fingerprint, you will be able to
0:05:30.460,0:05:35.020
reidentify people with this unique[br]sequence.
0:05:35.020,0:05:39.490
And in between the fingerprint[br]and the genome there will be a lot of
0:05:39.490,0:05:46.370
genetic profiles that have some kind of[br]reach depending on how far you want to
0:05:46.370,0:05:52.620
look, how deep you want to look.[br]And of course people said, this is quite
0:05:52.620,0:05:57.539
important information,[br]so they said the human genome will
0:05:57.539,0:06:02.330
actually be a final frontier in biology,[br]because it actually, it is our source code,
0:06:02.330,0:06:11.849
and this is what makes us us. And so they[br]started the Human Genome Project and said
0:06:11.849,0:06:19.330
if we sequence all this DNA, then we will[br]be able to reach kind of the Holy Grail
0:06:19.330,0:06:28.410
and they expected 100,000 genes and Bill[br]Gates then said, this would be the
0:06:28.410,0:06:36.760
language in which God created life, so[br]this was kind of a, yeah, a major goal
0:06:36.760,0:06:42.699
that they wanted to do. And then they[br]found out that there are only 19,000 to
0:06:42.699,0:06:46.770
20,000 genes, which is about the same[br]number as nematodes, so - that's a kind of
0:06:46.770,0:06:57.099
little worm - and four times more than the[br]bacteria in your gut, and so the leader of
0:06:57.099,0:07:02.650
the project, Craig Venter, whose own[br]genome was sequenced, he then said "we
0:07:02.650,0:07:08.969
don't know a shit", he said, we have no[br]idea what it means. And there they said
0:07:08.969,0:07:14.669
then, well, to find out more we actually[br]need to sequence more genomes. And this
0:07:14.669,0:07:19.290
does make sense, because, if you want to[br]find answers in the genome, then you have
0:07:19.290,0:07:25.680
to compare these genomes, and this then[br]lead to different projects, which are still
0:07:25.680,0:07:33.520
going on, like the 1000 Genomes project, the[br]10,000 autism genome project, the
0:07:33.520,0:07:38.949
100,000 genomes project in the UK,[br]and the 1,000,000 genomes project in the
0:07:38.949,0:07:43.949
US, and there are other genome projects,[br]like for example the Cancer Genome Project
0:07:43.949,0:07:49.250
and these all aim at a kind of[br]personalized medicine, so to compare your
0:07:49.250,0:07:57.590
DNA and then adjust treatment to your[br]genome. But as I will tell you soon, these
0:07:57.590,0:08:07.180
will not answer all the questions, because[br]DNA is much more about the regulation. Our
0:08:07.180,0:08:16.169
DNA is regulated, in a way that it's more[br]mobile and agile to respond, or, actually
0:08:16.169,0:08:21.650
the DNA is quite static, but the[br]regulation of the DNA actually made... makes
0:08:21.650,0:08:27.780
it extremely adaptive. And then there is[br]another thing, because
0:08:27.780,0:08:35.309
as I said, DNA is a code. It's similar to[br]your code that you do for a program, but
0:08:35.309,0:08:42.969
then how the user uses this program can[br]vary extremely widely, so you will find
0:08:42.969,0:08:48.500
that, even though the similar... the[br]information is similar in people, it might
0:08:48.500,0:08:54.910
look different in the person itself. So,[br]just to give you a quick impression about
0:08:54.910,0:09:00.529
how these interactions look like. These[br]are the products of the genome, or some of
0:09:00.529,0:09:07.590
the project... products, they're called[br]proteins and these interact with ... with
0:09:07.590,0:09:13.610
each other, and we will find that they have[br]all these interactions, all these
0:09:13.610,0:09:18.920
crossroads. One interacts with the next[br]and this then inhibits something else and
0:09:18.920,0:09:27.330
this is quite complex. But still, DNA[br]research does have its uses, so it will
0:09:27.330,0:09:32.500
provide us with valuable information, but[br]what you need to keep in mind is that is
0:09:32.500,0:09:38.730
it valuable for whom? So it could be used,[br]the whole genome sequencing could soon be
0:09:38.730,0:09:43.589
used instead of specific tests, because[br]it's becoming more and more cheaper all
0:09:43.589,0:09:47.970
the time and it would give us the[br]possibility to study specific genes in a
0:09:47.970,0:09:57.190
population, a genetic disease, inherited[br]cancer and genetic risks. And so, since I'm
0:09:57.190,0:10:04.190
a cancer researcher, I'm doing a quick X[br]course here. You can study single gene
0:10:04.190,0:10:10.320
diseases, which are usually, then, if you[br]have a mutation, and you find this in the
0:10:10.320,0:10:15.900
genome, the person will have the disease[br]with a very very high likelihood. There're
0:10:15.900,0:10:20.070
very rare cases, which this does not[br]happen but these are very rare, these
0:10:20.070,0:10:27.590
single gene diseases and also there are[br]some cancer genes. These are genes, that
0:10:27.590,0:10:33.760
we all have but if they are mutated they[br]will very likely lead to cancer in a very,
0:10:33.760,0:10:39.260
at a very early point in life. And you[br]might remember Angelina Jolie, who found a
0:10:39.260,0:10:44.850
cancer gene or gene in her, that was ...[br]that would lead to her having breast
0:10:44.850,0:10:51.910
cancer very early in life and so she had[br]her breasts removed and this also exists
0:10:51.910,0:10:57.070
for colon cancer and there are also[br]special syndromes, which lead to having
0:10:57.070,0:11:10.210
more or being more susceptible to cancer,[br]so these are also rare, actually. But it
0:11:10.210,0:11:14.850
is very likely, that in the Western world[br]we will die from two major causes,
0:11:14.850,0:11:23.440
one is cardiovascular disease and the[br]other is cancer. And when you think about
0:11:23.440,0:11:29.780
how to not get cancer I always say: It is[br]to be boring, so you need to have a
0:11:29.780,0:11:36.199
healthy lifestyle, so no smoking, less[br]drinking, staying fit and not eating too
0:11:36.199,0:11:43.950
much and avoiding radioactivity also plays[br]a big part and not go into the Sun without
0:11:43.950,0:11:52.350
sunscreen and to accept your screening[br]appointments with your doctor, but even
0:11:52.350,0:11:57.670
then I always say that cancer is mostly[br]bad luck, which is also the opinion of
0:11:57.670,0:12:03.839
many cancer researchers. And if you don't[br]get it, it just means that you have not
0:12:03.839,0:12:08.149
died of something else earlier. Because it[br]is a disease that comes with age and it
0:12:08.149,0:12:16.769
gets more likely to have this disease as[br]you become older and genetic risk factors
0:12:16.769,0:12:23.720
then play very little role, actually. So[br]then let's talk about the private genetic
0:12:23.720,0:12:29.240
sequencing companies that are sprouting[br]up everywhere. You might have heard of
0:12:29.240,0:12:38.240
23andme, which is a mail in genetic test,[br]which tests you for diseases and ethnicity
0:12:38.240,0:12:44.079
and they sequence over 500,000 gene[br]locations. There's a similar company
0:12:44.079,0:12:50.820
called ancestry, which just check your[br]ancestry, so it's a kind of ethnicity. And
0:12:50.820,0:12:58.410
there's the ingenia.com "surname project",[br]which compares your DNA to a male lineage
0:12:58.410,0:13:05.389
in the male lineage with the last name.[br]And also now we have whole genome
0:13:05.389,0:13:09.200
sequencing companies like the "Full[br]Genomes Cooperation", "Guardium", "Gene by
0:13:09.200,0:13:15.790
Gene" and even more. And you have to[br]realize that these companies will have
0:13:15.790,0:13:21.750
quite some genetic information stored. And[br]this is all nice and safe since the
0:13:21.750,0:13:26.050
government in America - where most of[br]these companies are - has repeatedly shown
0:13:26.050,0:13:32.290
to respect privacy. And of course that[br]won't change under the new president, I
0:13:32.290,0:13:42.579
think. so... already in 2010 Kashmir Hill[br]an author at Forbes, she wrote an article
0:13:42.579,0:13:49.029
called "Genome Hackers" where she showed[br]a lot of foresight. And - I'm just going
0:13:49.029,0:13:54.279
to quote here - "As gene tests become[br]common, possibilities for abuse will
0:13:54.279,0:13:57.949
intensify. Banks might not offer you a[br]mortgage if you were likely
0:13:57.949,0:14:03.480
to die before it was paid off. A pregnant[br]woman might secretly get DNA from her
0:14:03.480,0:14:07.870
lovers, so she knows who the father is.[br]Someone might check out a potential mate
0:14:07.870,0:14:13.790
for genetic flaws. Politicians might dig[br]up dirt on their rivals. Another question:
0:14:13.790,0:14:18.149
How far should law enforcement be allowed[br]to go? Should prosecutors be allowed to
0:14:18.149,0:14:23.910
subpoena a company's DNA database of[br]thousands of people if they suspect it
0:14:23.910,0:14:33.040
contains a match to a crime suspect? And[br]then a year later, Robert Langreth, he
0:14:33.040,0:14:37.459
referred to this article then said: "I[br]think this issue is just starting to
0:14:37.459,0:14:42.029
emerge. It will be a classic conflict[br]between scientists' desire for more data
0:14:42.029,0:14:47.980
and Americans' desire to keep sensitive[br]personal information private. If your DNA
0:14:47.980,0:14:52.110
is an easily accessible database,what are[br]the limits of what bureaucrats can do with
0:14:52.110,0:14:54.680
it?"[br]And what I find quite interesting here is
0:14:54.680,0:15:00.829
that he just makes this between scientists[br]and privacy oriented Americans, when we
0:15:00.829,0:15:06.690
think about it today it might be even more[br]like companies and people who don't really
0:15:06.690,0:15:16.050
think about privacy. And then we come a[br]little year, a couple of years later and
0:15:16.050,0:15:23.680
actually this is what then happens. So[br]23andme and ancestry were repeatedly asked
0:15:23.680,0:15:28.790
by law enforcement to hand over DNA[br]databases.
0:15:28.790,0:15:34.529
And they actually disclosed that they have[br]five DNA samples that they gave to the
0:15:34.529,0:15:48.730
cops and so one case for example, which[br]was not 23andme, but that's a filmmaker.
0:15:48.730,0:15:55.319
And there was a cold case and there was[br]DNA on the murder victim and they compared
0:15:55.319,0:16:01.769
it to a voluntary Y chromosome database or[br]so. A male lineage searched. And they
0:16:01.769,0:16:07.629
found out that the DNA on the murder[br]victim belonged to someone who was related
0:16:07.629,0:16:14.920
to someone in this database and that[br]someone actually had a son so they said,
0:16:14.920,0:16:22.420
well, then we test him. And so they found[br]filmmaker Usry and they tested him.
0:16:22.420,0:16:30.660
However the complete DNA then did not[br]match and he was cleared of the charge and
0:16:30.660,0:16:36.200
a statement by the privacy officer of[br]23andme kind of shows what we are getting
0:16:36.200,0:16:42.579
into because she said: "In the event we[br]are required by law to make a disclosure
0:16:42.579,0:16:46.790
we will notify the affected customer[br]through the contact information provided
0:16:46.790,0:16:51.779
to us, unless doing so would violate the[br]law or a court order."
0:16:51.779,0:16:57.829
So if your DNA becomes interesting in a[br]crime case they might tell you but they
0:16:57.829,0:17:04.579
might also not tell you and of course then[br]there's this "I've got nothing to hide and
0:17:04.579,0:17:10.640
the suspect was cleared so it will all be[br]in order after all" - just always remember
0:17:10.640,0:17:15.170
that there can be planted evidence.[br]Because, as I said, you shed your DNA
0:17:15.170,0:17:19.390
everywhere. And it's quite easy to obtain[br]your genetic information or place it at a
0:17:19.390,0:17:24.929
crime scene which might at least lead to[br]confusion. And there could be
0:17:24.929,0:17:29.640
circumstantial evidence so that a crime[br]happens somewhere where you're working or
0:17:29.640,0:17:36.441
where you are often. And always remember[br]the Heilbronn Phantom case, where they
0:17:36.441,0:17:45.081
found the DNA of a woman at completely[br]unconnected crime cases and this DNA was
0:17:45.081,0:17:53.860
later found in the swabs that they used to[br]test the evidence. Because the lady who
0:17:53.860,0:18:00.419
had produced these swabs had contaminated[br]the swabs and as you might remember this
0:18:00.419,0:18:09.100
led to a lot of confusion in the research[br]or in the criminal investigation. And if
0:18:09.100,0:18:13.870
you think that data is the new oil, it[br]truly is. For companies like 23andme who
0:18:13.870,0:18:19.279
have reportedly sold genetic data to[br]private companies and this was - of course
0:18:19.279,0:18:25.669
- for research. And they did it with 1.2[br]million genetic profiles that they have in
0:18:25.669,0:18:31.940
their database for parkinson research. And[br]there seemed to be more deals planned and
0:18:31.940,0:18:39.330
Anne Wojcicki of 23andMe, she said that[br]she wants the whole world's healthcare
0:18:39.330,0:18:46.970
data accessible to everyone. And of course[br]they do have a consent form and this is
0:18:46.970,0:18:54.840
signed by about 80% of customers, which[br]probably think "Well, if if I can help
0:18:54.840,0:19:00.640
with my DNA to do some research that's[br]fine." So, but do they really know what
0:19:00.640,0:19:06.690
they're getting into? And this is why I[br]would like to come to Genetic Sequencing
0:19:06.690,0:19:14.210
Privacy. And if we talk about privacy we[br]have to think about for whom is a genome
0:19:14.210,0:19:23.059
interesting. Since the 23andme test for[br]example is a mail-in tests so you could
0:19:23.059,0:19:29.060
send in the DNA of someone else and then[br]you could test someone else on their
0:19:29.060,0:19:32.700
genes. And this could be a prospective[br]partner - if they have
0:19:32.700,0:19:42.470
good DNA to have offspring with, maybe, or[br]might die early, or might die late. Family
0:19:42.470,0:19:45.330
members - if you want to know if your son[br]is really your son, your daughter is
0:19:45.330,0:19:51.210
really your daughter, test for paternity[br]and maybe if you want to know if you were
0:19:51.210,0:19:58.320
adopted. Insurance companies might be[br]quite interested in this data. Employers
0:19:58.320,0:20:04.320
could be interested. And prospective[br]parents could be interested, because you
0:20:04.320,0:20:12.320
can test - from just one cell - the genome[br]of an embryo for example. And who knows
0:20:12.320,0:20:19.799
who might else be interested, once more[br]information becomes accessible. And the
0:20:19.799,0:20:23.600
price is quite cheap actually to do. The[br]genetic test with 23andme is 200 dollars,
0:20:23.600,0:20:30.130
the price of a whole genome is now below[br]1,000 US dollars and the price will
0:20:30.130,0:20:39.120
decrease further. So we could be, should be[br]quite weary about what's going on. Because
0:20:39.120,0:20:46.050
for example 23andme blogs completely[br]openly about what they do. And they
0:20:46.050,0:20:50.760
connected a man to his biological father.[br]But this was not because his father had
0:20:50.760,0:20:58.460
entered his DNA in the database it was[br]because his cousin had. So someone put...
0:20:58.460,0:21:03.570
got tested by 23andme, 23andme said well[br]here is your cousin and then he found out
0:21:03.570,0:21:11.180
that this... that there could be his[br]father that he had been looking for. And
0:21:11.180,0:21:15.909
quite interestingly could be faith so[br]there's an African American woman who was
0:21:15.909,0:21:20.820
always interested in the Jewish faith and[br]then found out via 23andme that she is
0:21:20.820,0:21:31.760
related to the Ashkenazi Jewish tribe. And[br]today this information is well just
0:21:31.760,0:21:33.520
information, it doesn't really matter to[br]us.
0:21:33.520,0:21:42.000
But just remember if this information had[br]been available 70, 80 years earlier. And a
0:21:42.000,0:21:49.640
similar example could be Indian castes. So,[br]the caste system in India is outlawed. But
0:21:49.640,0:21:55.669
if you're still a traditionalist there,[br]you could test people to which caste they
0:21:55.669,0:22:03.950
belong to and discriminate against them.[br]And then there's another... another case
0:22:03.950,0:22:09.950
that just happened this year, where there[br]were plans of testing... gene testing at
0:22:09.950,0:22:14.940
the Kuwaiti border and they say, of[br]course, "This is anti-terrorism.", which
0:22:14.940,0:22:20.090
does not really make sense. Because you[br]need some DNA to compare and to find
0:22:20.090,0:22:28.450
terrorism and terrorists. There is no[br]"terror gene". And what could be the real
0:22:28.450,0:22:35.070
reason could be to keep out non-Kuwaitis,[br]because they have nomads, like beduines
0:22:35.070,0:22:42.990
that they don't really like. And that they[br]could also test family members and then
0:22:42.990,0:22:47.679
put them under pressure if they might have[br]an illegitimate child or if their wife has
0:22:47.679,0:22:56.659
been unfaithful just to put on some... yeah...[br]some kind of bad information about them.
0:22:56.659,0:23:04.590
And when I was doing research for the[br]talk I found quite interesting that a
0:23:04.590,0:23:09.490
blogger had his whole genome sequence and[br]he got a hard drive from Illumina and this
0:23:09.490,0:23:15.360
hard drive was actually encrypted and[br]wasn't encrypted by TrueCrypt. So this was
0:23:15.360,0:23:22.760
2 years ago and we now know that this[br]might have not been completely safe. And...
0:23:22.760,0:23:30.710
but we also have to take a... take up that[br]genetic data can be useful but we have to
0:23:30.710,0:23:34.290
have this compromise because it can be[br]misused.
0:23:34.290,0:23:39.309
And since it does have relevance in[br]research they are... there's a large
0:23:39.309,0:23:45.210
amount of genome stored for research[br]purposes at many institutes. And David
0:23:45.210,0:23:51.490
Goldstein said at the Institute of genome[br]medicine at Columbia University that there
0:23:51.490,0:23:54.890
is an irreversible drive toward obtaining[br]more and more complete genetic
0:23:54.890,0:23:59.529
information. And we are all going to be[br]sequenced the question is just who does it
0:23:59.529,0:24:03.080
and what is done with it. The challenge[br]will be to do good things with the data.
0:24:03.080,0:24:08.250
And if you want to do good things you have[br]to share the data and the genomes need to
0:24:08.250,0:24:13.090
be compared. And their data size is a[br]problem, because genomes can be extremely
0:24:13.090,0:24:19.770
large and depending on the coverage of the[br]data and of the genome and there's about
0:24:19.770,0:24:26.110
200 terabytes stored in Amazon Cloud for[br]the 1000 Genomes Project and there's also
0:24:26.110,0:24:32.180
now Google Genomics which wants to help[br]you with a big data of genomes.
0:24:32.180,0:24:38.169
And is that worth it? Well, maybe genome[br]research can be worth it for specific
0:24:38.169,0:24:43.100
purposes during research and to adjust[br]treatment of diseases, which works to a
0:24:43.100,0:24:52.640
point. But also in forensics. But then we[br]have to make up which limits. And for the
0:24:52.640,0:24:57.850
individual person genetic tests are[br]probably not necessary unless your doctor
0:24:57.850,0:25:05.750
advises you to. And you have to wonder if[br]your ancestry really matters that much to
0:25:05.750,0:25:12.760
you. And always keep in mind that this is[br]not just your information. It's also the
0:25:12.760,0:25:19.480
information of your relatives. And do you[br]really want to know what the test tells
0:25:19.480,0:25:23.909
you? Does it... If it comes up with a[br]genetic disease that cannot be treated -
0:25:23.909,0:25:30.880
do you want to know? And also if the DNA[br]gets out there, if your genetic
0:25:30.880,0:25:36.110
information is disclosed and you're[br]connected to it, you cannot change your
0:25:36.110,0:25:42.340
DNA. It will always be the same and you[br]can always be recognized by it.
0:25:42.340,0:25:47.500
So I'd like to thank you for all for your[br]attention and I hope you have some
0:25:47.500,0:25:53.420
questions for me.[br]Applause
0:25:53.420,0:26:04.789
Herald: Thank you so much for this talk. We[br]have six microphones here on the ground
0:26:04.789,0:26:11.260
floor. So if you want to... If you have a[br]question, you can line up there and we
0:26:11.260,0:26:19.230
still have some time left. There was one[br]question, at number 1.
0:26:19.230,0:26:21.930
Mic 2: Yeah, thank you for your talk and[br]for the information.
0:26:21.930,0:26:24.890
AH: No, number 1.[br]M2: Oh, sorry.
0:26:24.890,0:26:30.330
laughter[br]Mic 1: Hi! So you were talking about this
0:26:30.330,0:26:37.549
problem with people wanting to share[br]their... their genetic sequence for
0:26:37.549,0:26:43.929
science, but on the other side you have[br]the problem that the scope of that is not
0:26:43.929,0:26:50.370
obvious. Could you solve that by like[br]putting everything into public domain.
0:26:50.370,0:26:55.090
AB: Public domain of all genomes?[br]M1: Yeah. I don't know it's just a
0:26:55.090,0:26:57.090
thought.[br]AB: That would be kind of the post privacy
0:26:57.090,0:27:00.090
approach that you're all... hold... or[br]that the genomes of the world are all in
0:27:00.090,0:27:08.350
public domain like this Columbia professor[br]said, maybe. Well, that's not really
0:27:08.350,0:27:12.059
solving, that's just saying "Okay, if we[br]have the information of everyone
0:27:12.059,0:27:17.409
available, then no one can be[br]discriminated against because there's dirt
0:27:17.409,0:27:23.330
on anyone... maybe?" But I don't know if[br]that's the correct way, because we have to
0:27:23.330,0:27:28.720
make a decision for 7, 8 billion people on[br]the world, so...
0:27:28.720,0:27:34.769
Herald: Thank you for this question. We have[br]also some question from the internet.
0:27:34.769,0:27:40.269
Signal Angel: As you don't want to give[br]genetic information to corperations and
0:27:40.269,0:27:46.320
government is it possible to... to do the[br]test at home and how much would it cost?
0:27:46.320,0:27:52.730
AB: So... the testing of the DNA is done[br]with 23andme but you can do the... you can
0:27:52.730,0:27:59.019
disagree to share the information, so...[br]and then you'd have to hope that they do
0:27:59.019,0:28:05.160
it is... like such. Or as such. But that[br]doesn't really kno... But then I don't
0:28:05.160,0:28:12.059
know if it might still come up for police[br]investigation, still. So doing it at home
0:28:12.059,0:28:20.300
would be quite difficult, because the[br]sequencing machines are very cost... or
0:28:20.300,0:28:27.020
very costly and very difficult to use. But[br]there was talk about doing it with a
0:28:27.020,0:28:32.150
smartphone. To have a just a tiny device[br]who does this for you. But I have not
0:28:32.150,0:28:38.710
heard that this is now accessible yet.[br]Herald: Another question from number 3.
0:28:38.710,0:28:44.039
Mic 3: Hi, from your expert point of view,[br]have you been thinking of or are you in a
0:28:44.039,0:28:48.390
database for a bone marrow donations and[br]what do you think about that?
0:28:48.390,0:28:53.270
AB: Yeah I actually am and I did this when[br]I was 16 and wasn't really thinking about
0:28:53.270,0:29:01.890
it. I think now that this is... they will[br]probably not take your whole genome, but
0:29:01.890,0:29:06.919
they do have some information on me stored[br]and they might even have the probe still
0:29:06.919,0:29:14.750
stored. Like the blood that I gave at that[br]point. So they could still be doing - if
0:29:14.750,0:29:22.000
they were criminals - just test my genome[br]for that. So yes, but I am in the database
0:29:22.000,0:29:27.900
and also a blood donor. So my blood is[br]somewhere out there, all the time, and...
0:29:27.900,0:29:33.049
M3: And have you been thinking of revoking[br]it? Like... Maybe you can revoke your
0:29:33.049,0:29:38.919
database entry?[br]AB: I think I could... But for this... As
0:29:38.919,0:29:41.740
long as I don't know that they actually[br]take my genome out of it, as long as they
0:29:41.740,0:29:50.300
just store the information on my... yeah,[br]my major histocompatibility complex so
0:29:50.300,0:29:56.100
that's what they what they look at. But[br]they look at it genetically. I just hope
0:29:56.100,0:30:01.809
to do some good, but, yeah you're right.[br]They pro... they probably don't have my
0:30:01.809,0:30:07.070
whole genome as such, as information. But[br]they do have some genetic information and
0:30:07.070,0:30:14.890
they do have my probe stored, so...[br]Herald: Thank you for this question. There is
0:30:14.890,0:30:19.610
another question from the internet.[br]Signal angel: Do you think these kind of studies are
0:30:19.610,0:30:24.399
already carried out secretly from our[br]samples we give to health care orgs just
0:30:24.399,0:30:29.470
like blood giving?[br]AB: Well, well,... If they do it secretly,
0:30:29.470,0:30:36.190
then I don't... probably don't know about[br]it. But... So that's quite difficult to
0:30:36.190,0:30:43.210
answer. But it could be possible,[br]especially in regimes where there's no
0:30:43.210,0:30:51.980
democracy, for example. And but... I'm not[br]sure if this happens, because I don't have
0:30:51.980,0:30:59.740
that kind of information.[br]Herald: So, another question from number 2.
0:30:59.740,0:31:07.100
M2: Um, hello! I think there was a project[br]that, instead of working with a lot of
0:31:07.100,0:31:14.500
different genome sequence, try to work with[br]a single sequence and branching for
0:31:14.500,0:31:20.250
basically branching the little differences[br]for... for everybody. Would that solve the
0:31:20.250,0:31:25.210
privary... the privacy problems a bit?[br]AB: To just look at the differences to
0:31:25.210,0:31:27.730
other genomes?[br]M3: Yeah or would that there... we know
0:31:27.730,0:31:32.419
the research and stuff...[br]AB: Well this... So there is a format that
0:31:32.419,0:31:37.200
just checks for differences in the genome[br]which is... gives you a much smaller data
0:31:37.200,0:31:42.639
size, so you have your common genome and[br]then you have the data si... uhm... just
0:31:42.639,0:31:48.260
what... the delta of it. And... but this[br]will actually just give everything that is
0:31:48.260,0:31:57.260
not... well, not normal, so as a[br]probability term... than your... than your
0:31:57.260,0:32:02.960
DNA. So it's actually more condensed[br]information of what makes you... your
0:32:02.960,0:32:06.460
genetic code your genetic code. So that's[br]not really helping with the privacy.
0:32:06.460,0:32:09.730
M3: So it's a still... you can still[br]identify the single person,
0:32:09.730,0:32:12.730
AB: Yeah. Yeah.[br]M3: Okay thank you.
0:32:12.730,0:32:15.820
Herald: Yeah, that was, unfortunately, the[br]last question, because we are running out
0:32:15.820,0:32:20.769
of time. The next talk is waiting. Please[br]give again a warm applause to Adora Belle.
0:32:20.769,0:32:24.699
applause[br]music
0:32:24.699,0:32:48.000
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