 of hackers in this room, but I don't know if you knew that, but every being on this planet has a source code, even your cats, your girlfriend, your boyfriend, and your dog. And the next speaker actually know how to read the source code of human beings, beings of the human genome. Anna Müller is a German medical biotechnologist and she completed her PhD in cancer research. But she is also a science blogger, podcaster, and science slammer, known under the name Adora Bell. She says something that's quite interesting for me as a privacy activist. She says genome sequencing provides us with opportunities for medical and biological science, but with challenges in ethics and privacy. Please give a round of applause to the next speaker, Adora Bell. Yeah, hello and welcome to my talk about genetic codes and what they tell us and everyone else. You might realize it's a little different code than most of you are used to. So at first I'd like to introduce myself to say who I am and how did I get here. Katasha already told you some of that so I can go quite quickly. I'm a biologist and I did my PhD in cancer research so I'm always interested about cancer and this talk will have a slight influence by that. I'm blogging, I'm podcasting, I'm talking about science and slamming about science as well. But what people might actually wonder is how did I actually get here? And you may remember a couple of years ago, the KS Communication Club, KS Computer Club, sorry. They stole the fingerprint of Wolfgang Scheuble because he wanted to put the fingerprint of each of us on our ID cards. And as you might have realized the last time you renewed your ID card, that actually happened. And at the time I was in Scotland and I was doing a course in forensics and it's actually me at a mock crime scene so no people were harmed but I was quite sweaty under this suit so. And I realized that if you take the glass of someone they drinks from and you take the fingerprint, you can also take the genetic fingerprint and actually there's the whole genome of someone on there. So to quickly summarize where you can find genetic information, you can find it just about anywhere. You can find it on shed skin cells in the saliva, in blood, in hair, in urine, in feces, in sperm, in vaginal fluid and we actually, we spread it all the time. And for example, you have it on your toothbrush, on your hairbrush, on your keyboard, other personal items like your cell phone. It's even on used condoms and remember there's probably also the DNA of someone else on there. And also you have it on other people so if you scratch someone, you have their DNA, if you lose hair and skin cells, if you touch people you will transfer some of your genetic information. And also like I said with Wolfgang Scheuble on glasses, on letters that you lick to close them, on cigarettes that you smoke. And also some part of your DNA and this is quite important is in your relatives because you share the genetic information to some extent. So to quickly introduce the terms genetic fingerprints, genetic fingerprints actually provide no personal information as such besides the biological gender. That's what you can actually check for but the other information is nonsense information that will not tell you anything about the person. But it gives you a possibility to find relatives since you share these information. And it gives you the possibility to re-identify people and it's a unique sequence. And if you compare this to a whole genome which is becoming more common now in research you can find the biological gender of course, you can find the ethnicity of a person, you can look at genetic diseases, you can find out something about the looks of the person and you can find out things about their relatives as well. And as we do more research we will find that there will be even more information to come and similar to the fingerprint you will be able to re-identify people with this unique sequence. And in between the fingerprint and the genome there will be a lot of genetic profiles that have some kind of reach depending on how far you want to look or deep you want to look. And of course people said this is quite important information so they said the human genome will actually be a final frontier in biology because it actually, it is our source code and this is what makes us us. And so they started the human genome project and said if we sequence all this DNA then we will be able to reach kind of the holy grail and they expected 100,000 genes and Bill Gates then said this would be the language in which God created life. So this was kind of a major goal that they wanted to do. And then they found out that there are only 19 to 20,000 genes which is about the same number as nematodes so that's kind of a little worm. And four times more than the bacteria in your gut. And so the leader of the project, Craig Venter, whose own genome was sequenced, he then said we don't know a shit. He said we have no idea what it means and they said then well to find out more we actually need to sequence more genomes. And this does make sense because if you want to find answers in the genome then you have to compare these genomes. And this then led to different projects which are still going on like the 1000 genomes project, the 10,000 autism genome project, the 100,000 genomes project in the UK and the 1 million genomes project in the US and there are other genome projects like for example the cancer genome project and these all aim at a kind of personalized medicine so to compare your DNA and then adjust treatment to your genome. But as I will tell you soon these will not answer all the questions because DNA is much more about the regulation. Our DNA is regulated in a way that it's more mobile and agile to respond. Our actually the DNA is quite static but the regulation of the DNA actually makes it extremely adaptive and then there's another thing because as I said DNA is a code. It's similar to your code that you do for a program but then how the user uses this program can vary extremely widely. So you will find that even though the information is similar in people it might look different in the person itself. So just to give you a quick impression about how these interactions look like these are the products of the genome or some of the products, they're called proteins and they interact with each other and we will find that they have all these interactions all these crossroads one interacts with the next and this then inhibits something else and this is quite complex. But still DNA research does have its uses so it will provide us with valuable information but what you need to keep in mind is that is it valuable for whom? So it could be used as the whole genome sequencing could soon be used instead of specific tests because it's becoming more and more cheaper all the time and it would give us the possibility to study specific genes in a population a genetic disease inherited cancer and genetic risks and so since I'm a cancer researcher I'm doing a quick X course here you can study single gene diseases which are usually then if you have a mutation and you find this in the genome the person will have the disease with a very very high likelihood they're very rare cases which does not happen but these are very rare these single gene diseases and also there are some cancer genes these are genes that we all have but if they are mutated they will very likely lead to cancer at a very early point in life and you might remember Angelina Jolie who found a cancer gene in her that would lead to her having breast cancer very early in life and so she had her breasts removed and this also exists for colon cancer and there are also special syndromes which lead to having more or being more susceptible to cancer so these are also rare actually but it is very likely that in the western world we will die from two major courses one is cardiovascular disease and the other is cancer and when you think about how to not get cancer I always say it is to be boring so you need to have a healthy lifestyle so no smoking, less drinking, staying fit and not eating too much and avoiding radioactivity also plays a big part and not to go into the sun without sunscreen and to accept your screening appointments with your doctor but even then I always say that cancer is mostly bad luck which is also the opinion of many cancer researchers and if you don't get it it just means that you have not died of something else earlier because it is a disease that comes with age and it gets more likely to have this disease as you become older and genetic risk factors then play a very little role actually so then let's talk about the private genetic sequencing companies that are sprouting up everywhere you might have heard of 23andMe which is a mail-in genetic test which tests you for diseases and ethnicity and they sequence over 500,000 gene locations there's a similar company called Ancestry which just check your ancestry so it's a kind of ethnicity and there's the ingenia.com surname project which compares your DNA to a male lineage in the male lineage with the last name and also now we have whole genome sequencing companies like the full genomes cooperation, guardian gene by gene and even more and you have to realize that these companies will have quite some genetic information stored and this is all nice and safe since the government in America where most of these companies are has repeatedly shown to respect privacy and of course that won't change under the new president I think so already in 2010, Kashmir Hill, an author at Forbes she wrote an article called Genome Hackers where she showed a lot of foresight and I'm just going to quote here as gene tests become common possibilities for abuse will intensify banks might not offer you a mortgage if you were likely to die before it was paid off a pregnant woman might secretly get DNA from her lovers so she knows who the father is someone might check out a potential maid for genetic flaws politicians might dig up dirt on their rivals another question how far should law enforcement be allowed to go? should prosecutors be allowed to subpoena a company's DNA database of thousands of people if they suspect it contains a match to a crime suspect and then a year later Robert Langrath he referred to this article and then said I think this issue is just starting to emerge it will be a classic conflict between scientists desire for more data and Americans desire to keep sensitive personal information private if your DNA is an easily accessible database what are the limits of what bureaucrats can do with it? and what I find quite interesting here is that he just makes this between scientists and privacy-oriented Americans when we think about it today it might be more like companies and people who don't really think about privacy and then we come a little year a couple of years later and actually this is what then happens so 23 and me and ancestry were repeatedly asked by law enforcement to hand over DNA databases and they actually disclosed that they have five DNA samples that they gave to the cops and so one case for example which was not 23 and me but that's a filmmaker and there was a cold case and there was DNA on the murder victim and they compared it to a voluntary Y chromosome database search so a male lineage search and they found out that the DNA on the murder victim belonged to someone who was related to someone in this database and that someone actually had a son so they said, well then we test him and so they found filmmaker Azri and they tested him however the complete DNA then did not match and he was cleared of the charge and a statement by the privacy officer of 23 and me kind of shows what we are getting into because she said in the event we are required by law to make a disclosure we will notify the affected customer through the contact information provided to us unless doing so would violate the law for court order so if your DNA becomes interesting in a crime case they might tell you but they might also not tell you and of course then there's this I've got nothing to hide and the suspect was cleared so it will all be in order after all just always remember that there can be planted evidence because as I said you shed your DNA everywhere and it's quite easy to obtain your genetic information and place it at a crime scene which might at least lead to confusion and there could be circumstantial evidence so that a crime happens somewhere where you're working or where you're often and always remember the Heilbronn Phantom case where they found the DNA of a woman at completely unconnected crime cases and this DNA was later later found in the swabs that they used to test the evidence because the lady who had produced these swabs had contaminated the swabs and as you might remember this led to a lot of confusion in the research or in the criminal investigation and if you think that data is the new oil that truly is for companies like 23andMe who have reportedly sold genetic data to private companies and this was of course for research and they did it with 1.2 million genetic profiles that they have in their database for Parkinson research and they seem to be more deals planned and Anne Wojciki of 23andMe she said that she wants the whole world's healthcare data accessible to everyone and of course they do have a consent form and this is signed by about 80% of customers which probably think well if I can help with my DNA to do some research that's fine but do they really know what they're getting into and this is why I would like to come to genetic sequencing privacy and if we talk about privacy we have to think about for whom is a genome interesting since the 23andMe test for example is a mail-in test so you could send in the DNA of someone else and then you could test someone else on their genes and this could be a prospective partner if they have good DNA to have offspring with maybe or might die early or might die late family members if you want to know if your son is really your son your daughter is really your daughter test for paternity and maybe if you want to know if you were adopted insurance companies might be quite interested in this data employers could be interested and prospective parents could be interested because you can test from just one cell the genome of an embryo for example and who knows who might else be interested once more information becomes accessible and the price is quite cheap actually to do the genetic test with 23andMe is $200 the price of a whole genome is now below $1000 and the price will decrease further so we could be should be quite weary about what's going on because for example 23andMe blogs completely openly about what they do and they connected a man to his biological father but this was not because his father had entered his DNA in the database it was because his cousin had so someone got tested by 23andMe said well he is your cousin and then he found out that there could be his father that he had been looking for and quite interestingly could be faith so there's an African-American woman who was always interested in the Jewish faith and then found out via 23andMe that she is related to the Ashkenazi Jewish tribe and today this information is well just information it doesn't really matter to us but just remember if this information had been available 70, 80 years earlier and a similar example could be Indian case so the case system in India is outlawed but if you're still a traditionalist there you could test people to which case they belong to and discriminate against them and then there's another case that just happened this year where there are plans of testing gene testing at the Kuwaiti border and they say of course this is anti-terrorism which does not really make sense because you need some DNA to compare and to find terrorism and terrorists there is no terror gene and what could be the real reason could be to keep out non Kuwaitis because they have nomads like Bedouins that they don't really like and that they could also test family members and then put them under pressure if they might have an illegitimate child or if their wife has been unfaithful just to put on some kind of bad information about them and when I was doing research for the talk I found quite interesting that blogger had his whole genome sequence and he got a hard drive from Illumina and this hard drive was actually encrypted and was encrypted by TrueCrypt so this was two years ago and we now know that this might have not been completely safe and but we also have to take up that genetic data can be useful but we have to have this compromise because it can be misused and since it does have relevance in research there's a large amount of genome stored for research purposes at many institutes and David Goldstein said at the institute of genome medicine at Columbia University that there is an irreversible drive toward obtaining more and more complete genetic information and we are all going to be sequenced the question is just who does it and what is done with it the challenge will be to do good things with the data and if you want to do good things you have to share the data and the genomes need to be compared and their data size is a problem because genomes can be extremely large and depending on the coverage of the data and of the genome and there's about 200 terabytes stored in Amazon cloud for the 1000 genome project and there's also now Google genomics which wants to help you with the big data of genomes and is that worth it well maybe genome research can be worth it for specific purposes during research and to adjust treatment of diseases which works to a point but also in forensics but then we have to make up which limits and for the individual individual person genetic tests are probably not necessary unless your doctor advises you to and you have to wonder if your ancestry really matters that much to you and always keep in mind that this is not just your information it's also the information of your relatives and do you really want to know what the test tells you if it comes up with a genetic disease that cannot be treated do you want to know and also if the DNA gets out there if your genetic information is disclosed and you're connected to it you cannot change your DNA it will always be the same and you can always be recognized by it so I'd like to thank you all for your attention and I hope you have some questions for me thank you so much for this talk we have six microphones here on the ground floor so if you want to if you have a question you can line up there and we still have some time left there was one question at number one yeah thank you for your talk and for the information no number one sorry hi so you were talking about this problem with people wanting to share their their genetic sequence for science but on the other side you have the problem that the scope of that is not obvious could you solve that by like putting everything into public domain public domain of all genomes yeah I don't know it's just that would be kind of the post-privacy approach or that the genomes of the world are all in public domain like this Columbia professor said maybe well that's not really solving that's just saying okay if we have the information of everyone available then no one can be discriminated against because there's dirt on anyone maybe but I don't know if that's the correct way because we have to make a decision for seven eight billion people on the world so thank you for this question we have also some question from the internet as you don't want to give genetic information to corporations and government is it possible to do the test at home and how much would it cost so the testing of the DNA is done with 23 and me but you can do the you can disagree to share the information so and then you would have to hope that they do it like such or as such but that doesn't really know but then I don't know if it might still come up for police investigation still so doing it at home would be quite yeah difficult because the sequencing machines are very cost or very costly and very difficult to use but there was talk about doing it with a smartphone to have just a tiny device who does this for you but I have not heard that this is now accessible yet another question from number three hi from your expert point of view have you been thinking of or are you in a database for bone marrow donations and what do you think about that yeah I actually am and I did this when I was 16 and wasn't really thinking about it I think now that this is they will probably not take your whole genome but they do have some information on me stored and they might even have the probe still stored like the blood that I gave at that point so they could still be doing if they were criminals just test my genome for that so yes but I am in the database and also a blood donor so my blood is somewhere out there all the time and have you been thinking of revoking it like maybe you can revoke your database entry I think I could but for this as long as I don't know that they actually take my genome out of it as long as they just store the information on my major histocompatibility complex so that's what they look at but they look at it genetically I just hope to do some good but yeah you're right they probably don't have my whole genome as such as information but they do have some genetic information and they do have my probe stored so thank you for this question um there is another question from the internet do you think these kind of studies are already carried out secretly from our samples we give to health care orcs just like blood giving well well if they do it secretly then I don't probably don't know about it but so that's quite difficult to answer but it could be possible especially in in regimes where there's no democracy for example and but I'm not sure if this happens because I don't have that kind of information so another question from number two hello I think there was a project that instead of working with a lot of different genome sequence try to work with a single sequence and branching for basically branching the little differences for for everybody would that solve the the privacy problems a bit to just look at the differences to other genomes yeah or would that impair the research and stuff well this so there is a format that just checks for differences in the genome which is gives you a much smaller data size so you have your common genome and then you have the data size the just what the delta of it and but this will actually just give everything that is not well not normal so as a probability term then your then your DNA so it's actually more condensed information of what makes you your genetic code your genetic code so that's not really helping with the privacy so it's still like you can still identify the single person okay thank you yeah that was unfortunately the last question because we are running out of time the next talk is waiting please give again a warm applause to adora bell