1 00:00:14,370 --> 00:00:15,910 *music* Herald Angel: Well, a lot of hackers in 2 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 3 00:00:21,910 --> 00:00:29,099 has a source code. Even your cats, your girlfriend, your boyfriend and your dog. 4 00:00:29,099 --> 00:00:37,330 And the next speaker actually know how to read the source code of human beings - the 5 00:00:37,330 --> 00:00:42,910 human genome. Anna Müllner is a German medical biotechnologist and she completed 6 00:00:42,910 --> 00:00:49,289 her PhD in cancer research, but she is also a science blogger, podcaster and 7 00:00:49,289 --> 00:00:56,949 science slammer, known under the name Adora Belle. She says something that's 8 00:00:56,949 --> 00:01:02,361 quite interesting for me as a privacy activist, she says genome sequencing 9 00:01:02,361 --> 00:01:07,530 provides us with opportunities for medical and biological science, but with 10 00:01:07,530 --> 00:01:14,680 challenges in ethics and privacy. Please give a round of applause to the next 11 00:01:14,680 --> 00:01:20,320 speaker, Adora Belle! *applause* 12 00:01:24,010 --> 00:01:28,613 Adora Belle: Yeah, hello and welcome to my talk about genetic codes and what they 13 00:01:28,613 --> 00:01:34,320 tell us and everyone else. You might realize it's a little different code than 14 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, 15 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 16 00:01:46,540 --> 00:01:50,300 quickly. I'm a biologist and I did my PhD in cancer 17 00:01:50,300 --> 00:01:55,740 research, so I'm always interested about cancer. In this talk will have a slight 18 00:01:55,740 --> 00:02:01,910 influence by that. I'm blogging, I'm podcasting, I'm talking about science and 19 00:02:01,910 --> 00:02:07,640 slamming about science as well, but what people might actually wonder is how did I 20 00:02:07,640 --> 00:02:12,410 actually get here? And you may remember a couple of years ago, 21 00:02:12,410 --> 00:02:21,950 the Chaos Communication Club, Chaos Computer Club, sorry, they stole the 22 00:02:21,950 --> 00:02:25,799 fingerprint of Wolfgang Schäuble, because he wanted to put the fingerprint of each 23 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 24 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 25 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 26 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 27 00:02:52,819 --> 00:02:57,760 you take the glass of someone they drinks from and you take a fingerprint you can 28 00:02:57,760 --> 00:03:00,840 also take the genetic fingerprint and actually 29 00:03:00,840 --> 00:03:08,799 there's a whole genome of someone on there. So to quickly summarize where you 30 00:03:08,799 --> 00:03:15,409 can find genetic information: You can find it just about anywhere. You can find it on 31 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 32 00:03:22,549 --> 00:03:30,579 vaginal fluid, and we actually, we spread it all the time, and for example, you have 33 00:03:30,579 --> 00:03:35,860 it on your toothbrush, on your hairbrush, on your keyboard, other personal items 34 00:03:35,860 --> 00:03:40,959 like your cell phone, it's even on used condoms and remember, there's probably also 35 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 36 00:03:48,239 --> 00:03:53,659 scratch someone you have their DNA. If you lose hair and skin cells, if you touch 37 00:03:53,659 --> 00:04:01,700 people you will transfer some of your genetic information and also, like I said 38 00:04:01,700 --> 00:04:07,980 with Wolfgang Schäuble, on glasses, on letters that you lick to close them, on 39 00:04:07,980 --> 00:04:15,090 cigarettes that you smoke and also some part of your DNA, and this is quite 40 00:04:15,090 --> 00:04:20,769 important, is in your relatives. Because you share the genetic information to some 41 00:04:20,769 --> 00:04:29,000 extent. So to quickly introduce the terms. "Genetic fingerprints". Genetic 42 00:04:29,000 --> 00:04:34,240 fingerprints actually provide no personal information as such, besides the biological 43 00:04:34,240 --> 00:04:38,460 gender, that's what you can actually check for, but the other information is nonsense 44 00:04:38,460 --> 00:04:43,710 information, that will not tell you anything about the person. But it gives 45 00:04:43,710 --> 00:04:49,460 you a positi... possibility to find relatives since you share these 46 00:04:49,460 --> 00:04:56,150 information, and it gives you the possibility to reidentify people and it's 47 00:04:56,150 --> 00:05:01,640 a unique sequence. And if you compare this to a whole genome, which is becoming more 48 00:05:01,640 --> 00:05:08,740 common now in research, you can find the biological gender, of course, you can find 49 00:05:08,740 --> 00:05:13,449 the ethnicity of a person, you can look at genetic diseases, you can find out 50 00:05:13,449 --> 00:05:17,830 something about the looks of the person, and you can find out things about their 51 00:05:17,830 --> 00:05:24,020 relatives as well. And as we do more research, we will find that there will be 52 00:05:24,020 --> 00:05:30,460 even more information to come and similar to the fingerprint, you will be able to 53 00:05:30,460 --> 00:05:35,020 reidentify people with this unique sequence. 54 00:05:35,020 --> 00:05:39,490 And in between the fingerprint and the genome there will be a lot of 55 00:05:39,490 --> 00:05:46,370 genetic profiles that have some kind of reach depending on how far you want to 56 00:05:46,370 --> 00:05:52,620 look, how deep you want to look. And of course people said, this is quite 57 00:05:52,620 --> 00:05:57,539 important information, so they said the human genome will 58 00:05:57,539 --> 00:06:02,330 actually be a final frontier in biology, because it actually, it is our source code, 59 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 60 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 61 00:06:19,330 --> 00:06:28,410 and they expected 100,000 genes and Bill Gates then said, this would be the 62 00:06:28,410 --> 00:06:36,760 language in which God created life, so this was kind of a, yeah, a major goal 63 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 64 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 65 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 66 00:06:57,099 --> 00:07:02,650 the project, Craig Venter, whose own genome was sequenced, he then said "we 67 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 68 00:07:08,969 --> 00:07:14,669 then, well, to find out more we actually need to sequence more genomes. And this 69 00:07:14,669 --> 00:07:19,290 does make sense, because, if you want to find answers in the genome, then you have 70 00:07:19,290 --> 00:07:25,680 to compare these genomes, and this then lead to different projects, which are still 71 00:07:25,680 --> 00:07:33,520 going on, like the 1000 Genomes project, the 10,000 autism genome project, the 72 00:07:33,520 --> 00:07:38,949 100,000 genomes project in the UK, and the 1,000,000 genomes project in the 73 00:07:38,949 --> 00:07:43,949 US, and there are other genome projects, like for example the Cancer Genome Project 74 00:07:43,949 --> 00:07:49,250 and these all aim at a kind of personalized medicine, so to compare your 75 00:07:49,250 --> 00:07:57,590 DNA and then adjust treatment to your genome. But as I will tell you soon, these 76 00:07:57,590 --> 00:08:07,180 will not answer all the questions, because DNA is much more about the regulation. Our 77 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 78 00:08:16,169 --> 00:08:21,650 the DNA is quite static, but the regulation of the DNA actually made... makes 79 00:08:21,650 --> 00:08:27,780 it extremely adaptive. And then there is another thing, because 80 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 81 00:08:35,309 --> 00:08:42,969 then how the user uses this program can vary extremely widely, so you will find 82 00:08:42,969 --> 00:08:48,500 that, even though the similar... the information is similar in people, it might 83 00:08:48,500 --> 00:08:54,910 look different in the person itself. So, just to give you a quick impression about 84 00:08:54,910 --> 00:09:00,529 how these interactions look like. These are the products of the genome, or some of 85 00:09:00,529 --> 00:09:07,590 the project... products, they're called proteins and these interact with ... with 86 00:09:07,590 --> 00:09:13,610 each other, and we will find that they have all these interactions, all these 87 00:09:13,610 --> 00:09:18,920 crossroads. One interacts with the next and this then inhibits something else and 88 00:09:18,920 --> 00:09:27,330 this is quite complex. But still, DNA research does have its uses, so it will 89 00:09:27,330 --> 00:09:32,500 provide us with valuable information, but what you need to keep in mind is that is 90 00:09:32,500 --> 00:09:38,730 it valuable for whom? So it could be used, the whole genome sequencing could soon be 91 00:09:38,730 --> 00:09:43,589 used instead of specific tests, because it's becoming more and more cheaper all 92 00:09:43,589 --> 00:09:47,970 the time and it would give us the possibility to study specific genes in a 93 00:09:47,970 --> 00:09:57,190 population, a genetic disease, inherited cancer and genetic risks. And so, since I'm 94 00:09:57,190 --> 00:10:04,190 a cancer researcher, I'm doing a quick X course here. You can study single gene 95 00:10:04,190 --> 00:10:10,320 diseases, which are usually, then, if you have a mutation, and you find this in the 96 00:10:10,320 --> 00:10:15,900 genome, the person will have the disease with a very very high likelihood. There're 97 00:10:15,900 --> 00:10:20,070 very rare cases, which this does not happen but these are very rare, these 98 00:10:20,070 --> 00:10:27,590 single gene diseases and also there are some cancer genes. These are genes, that 99 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, 100 00:10:33,760 --> 00:10:39,260 at a very early point in life. And you might remember Angelina Jolie, who found a 101 00:10:39,260 --> 00:10:44,850 cancer gene or gene in her, that was ... that would lead to her having breast 102 00:10:44,850 --> 00:10:51,910 cancer very early in life and so she had her breasts removed and this also exists 103 00:10:51,910 --> 00:10:57,070 for colon cancer and there are also special syndromes, which lead to having 104 00:10:57,070 --> 00:11:10,210 more or being more susceptible to cancer, so these are also rare, actually. But it 105 00:11:10,210 --> 00:11:14,850 is very likely, that in the Western world we will die from two major causes, 106 00:11:14,850 --> 00:11:23,440 one is cardiovascular disease and the other is cancer. And when you think about 107 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 108 00:11:29,780 --> 00:11:36,199 healthy lifestyle, so no smoking, less drinking, staying fit and not eating too 109 00:11:36,199 --> 00:11:43,950 much and avoiding radioactivity also plays a big part and not go into the Sun without 110 00:11:43,950 --> 00:11:52,350 sunscreen and to accept your screening appointments with your doctor, but even 111 00:11:52,350 --> 00:11:57,670 then I always say that cancer is mostly bad luck, which is also the opinion of 112 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 113 00:12:03,839 --> 00:12:08,149 died of something else earlier. Because it is a disease that comes with age and it 114 00:12:08,149 --> 00:12:16,769 gets more likely to have this disease as you become older and genetic risk factors 115 00:12:16,769 --> 00:12:23,720 then play very little role, actually. So then let's talk about the private genetic 116 00:12:23,720 --> 00:12:29,240 sequencing companies that are sprouting up everywhere. You might have heard of 117 00:12:29,240 --> 00:12:38,240 23andme, which is a mail in genetic test, which tests you for diseases and ethnicity 118 00:12:38,240 --> 00:12:44,079 and they sequence over 500,000 gene locations. There's a similar company 119 00:12:44,079 --> 00:12:50,820 called ancestry, which just check your ancestry, so it's a kind of ethnicity. And 120 00:12:50,820 --> 00:12:58,410 there's the ingenia.com "surname project", which compares your DNA to a male lineage 121 00:12:58,410 --> 00:13:05,389 in the male lineage with the last name. And also now we have whole genome 122 00:13:05,389 --> 00:13:09,200 sequencing companies like the "Full Genomes Cooperation", "Guardium", "Gene by 123 00:13:09,200 --> 00:13:15,790 Gene" and even more. And you have to realize that these companies will have 124 00:13:15,790 --> 00:13:21,750 quite some genetic information stored. And this is all nice and safe since the 125 00:13:21,750 --> 00:13:26,050 government in America - where most of these companies are - has repeatedly shown 126 00:13:26,050 --> 00:13:32,290 to respect privacy. And of course that won't change under the new president, I 127 00:13:32,290 --> 00:13:42,579 think. so... already in 2010 Kashmir Hill an author at Forbes, she wrote an article 128 00:13:42,579 --> 00:13:49,029 called "Genome Hackers" where she showed a lot of foresight. And - I'm just going 129 00:13:49,029 --> 00:13:54,279 to quote here - "As gene tests become common, possibilities for abuse will 130 00:13:54,279 --> 00:13:57,949 intensify. Banks might not offer you a mortgage if you were likely 131 00:13:57,949 --> 00:14:03,480 to die before it was paid off. A pregnant woman might secretly get DNA from her 132 00:14:03,480 --> 00:14:07,870 lovers, so she knows who the father is. Someone might check out a potential mate 133 00:14:07,870 --> 00:14:13,790 for genetic flaws. Politicians might dig up dirt on their rivals. Another question: 134 00:14:13,790 --> 00:14:18,149 How far should law enforcement be allowed to go? Should prosecutors be allowed to 135 00:14:18,149 --> 00:14:23,910 subpoena a company's DNA database of thousands of people if they suspect it 136 00:14:23,910 --> 00:14:33,040 contains a match to a crime suspect? And then a year later, Robert Langreth, he 137 00:14:33,040 --> 00:14:37,459 referred to this article then said: "I think this issue is just starting to 138 00:14:37,459 --> 00:14:42,029 emerge. It will be a classic conflict between scientists' desire for more data 139 00:14:42,029 --> 00:14:47,980 and Americans' desire to keep sensitive personal information private. If your DNA 140 00:14:47,980 --> 00:14:52,110 is an easily accessible database,what are the limits of what bureaucrats can do with 141 00:14:52,110 --> 00:14:54,680 it?" And what I find quite interesting here is 142 00:14:54,680 --> 00:15:00,829 that he just makes this between scientists and privacy oriented Americans, when we 143 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 144 00:15:06,690 --> 00:15:16,050 think about privacy. And then we come a little year, a couple of years later and 145 00:15:16,050 --> 00:15:23,680 actually this is what then happens. So 23andme and ancestry were repeatedly asked 146 00:15:23,680 --> 00:15:28,790 by law enforcement to hand over DNA databases. 147 00:15:28,790 --> 00:15:34,529 And they actually disclosed that they have five DNA samples that they gave to the 148 00:15:34,529 --> 00:15:48,730 cops and so one case for example, which was not 23andme, but that's a filmmaker. 149 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 150 00:15:55,319 --> 00:16:01,769 it to a voluntary Y chromosome database or so. A male lineage searched. And they 151 00:16:01,769 --> 00:16:07,629 found out that the DNA on the murder victim belonged to someone who was related 152 00:16:07,629 --> 00:16:14,920 to someone in this database and that someone actually had a son so they said, 153 00:16:14,920 --> 00:16:22,420 well, then we test him. And so they found filmmaker Usry and they tested him. 154 00:16:22,420 --> 00:16:30,660 However the complete DNA then did not match and he was cleared of the charge and 155 00:16:30,660 --> 00:16:36,200 a statement by the privacy officer of 23andme kind of shows what we are getting 156 00:16:36,200 --> 00:16:42,579 into because she said: "In the event we are required by law to make a disclosure 157 00:16:42,579 --> 00:16:46,790 we will notify the affected customer through the contact information provided 158 00:16:46,790 --> 00:16:51,779 to us, unless doing so would violate the law or a court order." 159 00:16:51,779 --> 00:16:57,829 So if your DNA becomes interesting in a crime case they might tell you but they 160 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 161 00:17:04,579 --> 00:17:10,640 the suspect was cleared so it will all be in order after all" - just always remember 162 00:17:10,640 --> 00:17:15,170 that there can be planted evidence. Because, as I said, you shed your DNA 163 00:17:15,170 --> 00:17:19,390 everywhere. And it's quite easy to obtain your genetic information or place it at a 164 00:17:19,390 --> 00:17:24,929 crime scene which might at least lead to confusion. And there could be 165 00:17:24,929 --> 00:17:29,640 circumstantial evidence so that a crime happens somewhere where you're working or 166 00:17:29,640 --> 00:17:36,441 where you are often. And always remember the Heilbronn Phantom case, where they 167 00:17:36,441 --> 00:17:45,081 found the DNA of a woman at completely unconnected crime cases and this DNA was 168 00:17:45,081 --> 00:17:53,860 later found in the swabs that they used to test the evidence. Because the lady who 169 00:17:53,860 --> 00:18:00,419 had produced these swabs had contaminated the swabs and as you might remember this 170 00:18:00,419 --> 00:18:09,100 led to a lot of confusion in the research or in the criminal investigation. And if 171 00:18:09,100 --> 00:18:13,870 you think that data is the new oil, it truly is. For companies like 23andme who 172 00:18:13,870 --> 00:18:19,279 have reportedly sold genetic data to private companies and this was - of course 173 00:18:19,279 --> 00:18:25,669 - for research. And they did it with 1.2 million genetic profiles that they have in 174 00:18:25,669 --> 00:18:31,940 their database for parkinson research. And there seemed to be more deals planned and 175 00:18:31,940 --> 00:18:39,330 Anne Wojcicki of 23andMe, she said that she wants the whole world's healthcare 176 00:18:39,330 --> 00:18:46,970 data accessible to everyone. And of course they do have a consent form and this is 177 00:18:46,970 --> 00:18:54,840 signed by about 80% of customers, which probably think "Well, if if I can help 178 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 179 00:19:00,640 --> 00:19:06,690 they're getting into? And this is why I would like to come to Genetic Sequencing 180 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 181 00:19:14,210 --> 00:19:23,059 interesting. Since the 23andme test for example is a mail-in tests so you could 182 00:19:23,059 --> 00:19:29,060 send in the DNA of someone else and then you could test someone else on their 183 00:19:29,060 --> 00:19:32,700 genes. And this could be a prospective partner - if they have 184 00:19:32,700 --> 00:19:42,470 good DNA to have offspring with, maybe, or might die early, or might die late. Family 185 00:19:42,470 --> 00:19:45,330 members - if you want to know if your son is really your son, your daughter is 186 00:19:45,330 --> 00:19:51,210 really your daughter, test for paternity and maybe if you want to know if you were 187 00:19:51,210 --> 00:19:58,320 adopted. Insurance companies might be quite interested in this data. Employers 188 00:19:58,320 --> 00:20:04,320 could be interested. And prospective parents could be interested, because you 189 00:20:04,320 --> 00:20:12,320 can test - from just one cell - the genome of an embryo for example. And who knows 190 00:20:12,320 --> 00:20:19,799 who might else be interested, once more information becomes accessible. And the 191 00:20:19,799 --> 00:20:23,600 price is quite cheap actually to do. The genetic test with 23andme is 200 dollars, 192 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 193 00:20:30,130 --> 00:20:39,120 decrease further. So we could be, should be quite weary about what's going on. Because 194 00:20:39,120 --> 00:20:46,050 for example 23andme blogs completely openly about what they do. And they 195 00:20:46,050 --> 00:20:50,760 connected a man to his biological father. But this was not because his father had 196 00:20:50,760 --> 00:20:58,460 entered his DNA in the database it was because his cousin had. So someone put... 197 00:20:58,460 --> 00:21:03,570 got tested by 23andme, 23andme said well here is your cousin and then he found out 198 00:21:03,570 --> 00:21:11,180 that this... that there could be his father that he had been looking for. And 199 00:21:11,180 --> 00:21:15,909 quite interestingly could be faith so there's an African American woman who was 200 00:21:15,909 --> 00:21:20,820 always interested in the Jewish faith and then found out via 23andme that she is 201 00:21:20,820 --> 00:21:31,760 related to the Ashkenazi Jewish tribe. And today this information is well just 202 00:21:31,760 --> 00:21:33,520 information, it doesn't really matter to us. 203 00:21:33,520 --> 00:21:42,000 But just remember if this information had been available 70, 80 years earlier. And a 204 00:21:42,000 --> 00:21:49,640 similar example could be Indian castes. So, the caste system in India is outlawed. But 205 00:21:49,640 --> 00:21:55,669 if you're still a traditionalist there, you could test people to which caste they 206 00:21:55,669 --> 00:22:03,950 belong to and discriminate against them. And then there's another... another case 207 00:22:03,950 --> 00:22:09,950 that just happened this year, where there were plans of testing... gene testing at 208 00:22:09,950 --> 00:22:14,940 the Kuwaiti border and they say, of course, "This is anti-terrorism.", which 209 00:22:14,940 --> 00:22:20,090 does not really make sense. Because you need some DNA to compare and to find 210 00:22:20,090 --> 00:22:28,450 terrorism and terrorists. There is no "terror gene". And what could be the real 211 00:22:28,450 --> 00:22:35,070 reason could be to keep out non-Kuwaitis, because they have nomads, like beduines 212 00:22:35,070 --> 00:22:42,990 that they don't really like. And that they could also test family members and then 213 00:22:42,990 --> 00:22:47,679 put them under pressure if they might have an illegitimate child or if their wife has 214 00:22:47,679 --> 00:22:56,659 been unfaithful just to put on some... yeah... some kind of bad information about them. 215 00:22:56,659 --> 00:23:04,590 And when I was doing research for the talk I found quite interesting that a 216 00:23:04,590 --> 00:23:09,490 blogger had his whole genome sequence and he got a hard drive from Illumina and this 217 00:23:09,490 --> 00:23:15,360 hard drive was actually encrypted and wasn't encrypted by TrueCrypt. So this was 218 00:23:15,360 --> 00:23:22,760 2 years ago and we now know that this might have not been completely safe. And... 219 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 220 00:23:30,710 --> 00:23:34,290 have this compromise because it can be misused. 221 00:23:34,290 --> 00:23:39,309 And since it does have relevance in research they are... there's a large 222 00:23:39,309 --> 00:23:45,210 amount of genome stored for research purposes at many institutes. And David 223 00:23:45,210 --> 00:23:51,490 Goldstein said at the Institute of genome medicine at Columbia University that there 224 00:23:51,490 --> 00:23:54,890 is an irreversible drive toward obtaining more and more complete genetic 225 00:23:54,890 --> 00:23:59,529 information. And we are all going to be sequenced the question is just who does it 226 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. 227 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 228 00:24:08,250 --> 00:24:13,090 be compared. And their data size is a problem, because genomes can be extremely 229 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 230 00:24:19,770 --> 00:24:26,110 200 terabytes stored in Amazon Cloud for the 1000 Genomes Project and there's also 231 00:24:26,110 --> 00:24:32,180 now Google Genomics which wants to help you with a big data of genomes. 232 00:24:32,180 --> 00:24:38,169 And is that worth it? Well, maybe genome research can be worth it for specific 233 00:24:38,169 --> 00:24:43,100 purposes during research and to adjust treatment of diseases, which works to a 234 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 235 00:24:52,640 --> 00:24:57,850 individual person genetic tests are probably not necessary unless your doctor 236 00:24:57,850 --> 00:25:05,750 advises you to. And you have to wonder if your ancestry really matters that much to 237 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 238 00:25:12,760 --> 00:25:19,480 information of your relatives. And do you really want to know what the test tells 239 00:25:19,480 --> 00:25:23,909 you? Does it... If it comes up with a genetic disease that cannot be treated - 240 00:25:23,909 --> 00:25:30,880 do you want to know? And also if the DNA gets out there, if your genetic 241 00:25:30,880 --> 00:25:36,110 information is disclosed and you're connected to it, you cannot change your 242 00:25:36,110 --> 00:25:42,340 DNA. It will always be the same and you can always be recognized by it. 243 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 244 00:25:47,500 --> 00:25:53,420 questions for me. *Applause* 245 00:25:53,420 --> 00:26:04,789 Herald: Thank you so much for this talk. We have six microphones here on the ground 246 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 247 00:26:11,260 --> 00:26:19,230 still have some time left. There was one question, at number 1. 248 00:26:19,230 --> 00:26:21,930 Mic 2: Yeah, thank you for your talk and for the information. 249 00:26:21,930 --> 00:26:24,890 AH: No, number 1. M2: Oh, sorry. 250 00:26:24,890 --> 00:26:30,330 *laughter* Mic 1: Hi! So you were talking about this 251 00:26:30,330 --> 00:26:37,549 problem with people wanting to share their... their genetic sequence for 252 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 253 00:26:43,929 --> 00:26:50,370 obvious. Could you solve that by like putting everything into public domain. 254 00:26:50,370 --> 00:26:55,090 AB: Public domain of all genomes? M1: Yeah. I don't know it's just a 255 00:26:55,090 --> 00:26:57,090 thought. AB: That would be kind of the post privacy 256 00:26:57,090 --> 00:27:00,090 approach that you're all... hold... or that the genomes of the world are all in 257 00:27:00,090 --> 00:27:08,350 public domain like this Columbia professor said, maybe. Well, that's not really 258 00:27:08,350 --> 00:27:12,059 solving, that's just saying "Okay, if we have the information of everyone 259 00:27:12,059 --> 00:27:17,409 available, then no one can be discriminated against because there's dirt 260 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 261 00:27:23,330 --> 00:27:28,720 make a decision for 7, 8 billion people on the world, so... 262 00:27:28,720 --> 00:27:34,769 Herald: Thank you for this question. We have also some question from the internet. 263 00:27:34,769 --> 00:27:40,269 Signal Angel: As you don't want to give genetic information to corperations and 264 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? 265 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 266 00:27:52,730 --> 00:27:59,019 disagree to share the information, so... and then you'd have to hope that they do 267 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 268 00:28:05,160 --> 00:28:12,059 know if it might still come up for police investigation, still. So doing it at home 269 00:28:12,059 --> 00:28:20,300 would be quite difficult, because the sequencing machines are very cost... or 270 00:28:20,300 --> 00:28:27,020 very costly and very difficult to use. But there was talk about doing it with a 271 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 272 00:28:32,150 --> 00:28:38,710 heard that this is now accessible yet. Herald: Another question from number 3. 273 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 274 00:28:44,039 --> 00:28:48,390 database for a bone marrow donations and what do you think about that? 275 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 276 00:28:53,270 --> 00:29:01,890 it. I think now that this is... they will probably not take your whole genome, but 277 00:29:01,890 --> 00:29:06,919 they do have some information on me stored and they might even have the probe still 278 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 279 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 280 00:29:22,000 --> 00:29:27,900 and also a blood donor. So my blood is somewhere out there, all the time, and... 281 00:29:27,900 --> 00:29:33,049 M3: And have you been thinking of revoking it? Like... Maybe you can revoke your 282 00:29:33,049 --> 00:29:38,919 database entry? AB: I think I could... But for this... As 283 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 284 00:29:41,740 --> 00:29:50,300 just store the information on my... yeah, my major histocompatibility complex so 285 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 286 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 287 00:30:01,809 --> 00:30:07,070 whole genome as such, as information. But they do have some genetic information and 288 00:30:07,070 --> 00:30:14,890 they do have my probe stored, so... Herald: Thank you for this question. There is 289 00:30:14,890 --> 00:30:19,610 another question from the internet. Signal angel: Do you think these kind of studies are 290 00:30:19,610 --> 00:30:24,399 already carried out secretly from our samples we give to health care orgs just 291 00:30:24,399 --> 00:30:29,470 like blood giving? AB: Well, well,... If they do it secretly, 292 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 293 00:30:36,190 --> 00:30:43,210 answer. But it could be possible, especially in regimes where there's no 294 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 295 00:30:51,980 --> 00:30:59,740 that kind of information. Herald: So, another question from number 2. 296 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 297 00:31:07,100 --> 00:31:14,500 different genome sequence, try to work with a single sequence and branching for 298 00:31:14,500 --> 00:31:20,250 basically branching the little differences for... for everybody. Would that solve the 299 00:31:20,250 --> 00:31:25,210 privary... the privacy problems a bit? AB: To just look at the differences to 300 00:31:25,210 --> 00:31:27,730 other genomes? M3: Yeah or would that there... we know 301 00:31:27,730 --> 00:31:32,419 the research and stuff... AB: Well this... So there is a format that 302 00:31:32,419 --> 00:31:37,200 just checks for differences in the genome which is... gives you a much smaller data 303 00:31:37,200 --> 00:31:42,639 size, so you have your common genome and then you have the data si... uhm... just 304 00:31:42,639 --> 00:31:48,260 what... the delta of it. And... but this will actually just give everything that is 305 00:31:48,260 --> 00:31:57,260 not... well, not normal, so as a probability term... than your... than your 306 00:31:57,260 --> 00:32:02,960 DNA. So it's actually more condensed information of what makes you... your 307 00:32:02,960 --> 00:32:06,460 genetic code your genetic code. So that's not really helping with the privacy. 308 00:32:06,460 --> 00:32:09,730 M3: So it's a still... you can still identify the single person, 309 00:32:09,730 --> 00:32:12,730 AB: Yeah. Yeah. M3: Okay thank you. 310 00:32:12,730 --> 00:32:15,820 Herald: Yeah, that was, unfortunately, the last question, because we are running out 311 00:32:15,820 --> 00:32:20,769 of time. The next talk is waiting. Please give again a warm applause to Adora Belle. 312 00:32:20,769 --> 00:32:24,699 *applause* *music* 313 00:32:24,699 --> 00:32:48,000 subtitles created by c3subtitles.de in the year 2017. Join, and help us!