From devices to bodies: DNA data collection
Beyond devices. Our bodies, are now becoming, that, sources, as well. From facial recognition. To collection, of dna. Information. Data sets about our bodies are being crossed, with data collected. From our digital, interactions. Taking, practices. Of profiling. To another, level. But, while critical, views, about the usages, of facial recognition. And other kinds of biometric. Data. Are read in the public, debate. Consequences. Of the increasing. Collection. Of dna, information. By private, and public, sector. Still, seems to be a little bit out of the rather. The context, of kovid, 19. Is also leading to an increase, in dna, data collection. The edits, of this panel. Organized, by coding rights, for, rightscom. Kickstarts. Our series, of debates. Entitled. From devices, to bodies. I leave my dna, all over the place, i shed hair, skin cells, saliva. But i've never gotten my dna, sequenced. So i shouldn't, have anything to worry about. But through familial, testing, if enough of my relatives, took tests. I could be identified. From a dna, sample, just like the golden state killer was. Now i'm not planning on committing any crimes. But there are still privacy, concerns, for me. First, false positives, exist in dna, tests, so i could end up the subject of an investigation. By mistake. Or a sketchy, insurance, company could find a way to correlate, some of my genetic, data, with other medical information. And discriminate, against. The video shows how dna, makes, even more. Evidence, that privacy, is also, a. Collective. Matter. As it makes, it even more difficult to have an approach, solely, on individual. In the report. That. You altered. The from fingerprints. To dna. You have already, talked about, concerns. With dna, data collection, particularly, focus on immigrant, communities. In the us. What has changed since. Then in terms of, usage of dna, and law enforcement. Targeting. Also a particular. Community. Or segment. Of the population. Dna, technology. Continues. To be, more sophisticated. Every year. And more sensitive. We can collect, dna, from. Surfaces, very easily, now, and, extract, profiles. We have technology. That can extract, a profile, from a dna, sample, in 90 minutes or less and, that is being used right now, in immigrant, communities. I think another, big change, is that. About 10 years ago we weren't really, seeing a focus, within the federal government in the united states on collecting, dna. From, immigrant, communities. And that has really changed with the trump administration. Just recently. The trump administration. Announced, that, the department of homeland security, will start, collecting, dna. From people in an immigration, context, so, they're going to start, with a couple border crossings, in the united states, at detroit, and a location, in texas. And they're going to start by collecting, dna, from people who have a criminal record. But eventually. They plan to collect dna. From, anybody, who is detained. In, dhs's, hands so that could be people in ice detention. That could be people in customs and border detention. And, that dna, once it's collected, will go into the fbi's. Broad, codis, database, which already contains, about 20 million profiles. And once you have profiles, in there, um, some states are already, doing familial, dna, testing. Uh on those profiles, and are able to map out, family, units, with that, that kind of testing. So i think that that will be something we're going to see on the near horizon, the federal government doesn't currently, do familial, testing. But there's nothing to prevent, it from doing that in the future, so that will, definitely, impact, immigrant communities. Inside the united states, brazil, is also. Using, coding database. So. What are the initiatives. Of the brazilian, government, related, to, massive, genetic, data collection. For law enforcement. And can you tell us. More about this partnership. With international. Agencies, well about the initiatives. Of the brazilian, government. Related to massive, genetic, data collection. The biggest, one is the national, bank, of genetic, profile, which gathers. Genetic. Information. From those convicted. For. Very severe, crimes. And also, dna, information. Collected, in crime scene, and this bank. Has increased. Largely, also we had a change of dna data collection. On the last years, because. One of the, campaign, promises, of ultra conservative. President jerry bolsonaro. From brazil. Was to raise the genetic, material. Data collection. To enhance law enforcement. In brazil, no to punish, more crimes. He has, this, narrative.
Of, Punishment. Which is very strong, inascadias. Brasileiras. Us negros, present. In the last year we had. The number of samples, in the bank. In this national bank of genetic profiles, went, to from, 18. 000, to over 70. 000. Profiles. Which is an increase of 288. Percent, more or less. Of the database. And a lot due to the massive dna collection, in prisons. That was enforced. Previously, to the approval, of the anti-crime. Law, in an attempt to accelerate. The number of. Profiles. In the in the national, bank, before the law was approved, it is interesting, to notice, that these genetic, profiles, collected in brazil are currently, being. Stored, in the database, that jennifer. Talked about, the code is which we imported, from, the fbi. And it's a system that crosses the information. From genetic, profiles, obtained with crime scenes information, and that's not the only, link between. The brazilian, government, and the fbi. Last year in march. Now former minister, of, justice, sergio moro and the director, of the federal police. Modern solace, went to washington. And they, signed the deal with the u.s. Federal bureau. To exchange, biometric, information, on criminal, groups and terrorists. From the two countries for criminal investigation. Program the question. Is that. We are under, ultra-conservative. Governments, both in brazil. And. In the us. And. The. Concept, of terrorists. And criminal, groups, can be questioned. So you can, make this, even broader, so you can have a lot of people having their. Their infant, information, exchange, between those two countries. Here in the uk. We had a situation. Where our dna, database, was expanding. Rapidly. They changed, the law so that, everybody's. Dna could be collected, on arrest, and also, kept, indefinitely. So even if you were never charged, or convicted, of a crime. And working with others we managed to overturn. That and we got. 1.7. Million people taken off the database. We've got more than seven million, samples, destroyed. And that's because, the database, was breaching, human rights, law and also it became a very controversial. Issue with the public. Who were happy for criminals, to be on the database, as they saw it but not for their own children, or people. You know, who were innocent or who had been accused, of very minor offenses. We had this it's not particularly new anymore but we have this project. Uh with a website. Dnapolicyinitiative.org. Where we're trying to document, what's going on all over the world with police dna, databases. Because we've had countries, like kuwait. Actually changed its law to try and put its whole population. On all visitors. On the dna, database. Kuwait, actually uh stepped back from that, uh tried to annul the law and then the constitutional. Court decided, that was illegal. So there is an international. Precedent, now that these kind of databases. Shouldn't grow too big you can't have an unjustified. Database, and again much more recently, in kenya. There was a decision, in the courts there earlier this year. Which overturned. A. Government. Law to try and include, dna, in its id, database. So, we're starting to see these really important, precedents. You know making a difference, so what kind of safeguards, do we need, well obviously we need safeguards, about who goes on to a police database. When you collect the dna. And particularly. The automatic. Removal, if you're not convicted. Or if you're innocent. Which is what we do have here in the uk. But there's, so many different safeguards, if you look at our report. Um you need to have quality assurance, in the labs, you need to have proper crime scene training, so that you don't contaminate, the samples, and convict, the wrong person. So the safeguards. Cover really a really broad range of issues, including, how the database. Is monitored. And when there's regular, reporting, on how it's. Used. Dna testing kits are booming. Last year on black friday weekend alone ancestor, dna sold roughly, 1.5.
Million, Kits, that's about triple what it sold in the same period, in 2016.. When you spin to a test tube you end up giving away, very sensitive, information, about yourself. We're guessing you didn't read the fine print so we'll let an attorney summarize, it, when you sign up for one of these tests and you click on the agree, to the terms of conditions. You are giving away substantially. All of your property, and privacy, and legal rights. To this dna. In the u.s what are the legal protections, for, dna databases. From the private, sector. And, can you tell us more about, cases in which, law enforcement. Has, access to dna, data collected, by private, companies. Like, 23andme. Genetic. Genealogy. Companies, like jet match, and so on so once you submit. Your. Dna, sample, to 23andme. Or ancestry.com. Or your dna, data to a company, like gedmatch. Um, you're subject to whatever the terms. You agree to when you, click agree, and you provide your data to the to those companies, so there there really aren't any. Specific, legal protections. Like there would be with health data. When that health data, is shared with a health care provider. Because, a company like 23andme. Isn't covered, under a definition. Of a healthcare, provider, under. The, health, privacy. Laws, in the united states. Um so that's the the first thing that's pretty concerning. It could be accessible, to insurers. Or to banks, in the future, to other kinds of third parties, like data brokers. And then there's the third party that i'm most concerned about which is law enforcement. And there aren't really any laws at this point at the federal or state level. Governing, how law enforcement, has access to this data. So, we are subject, to, really, how much the companies, push back on law enforcement. Access to data. Companies like 23andme. And ancestry.com. Have pushed back and they tell law enforcement, that they will require, a warrant, for access, to, dna, data but some of the other genetic, genealogy. Companies. Haven't pushed back so hard in the past. And what we've seen is that. By the beginning, of 2019. Over, 200, investigations. Were, actively, trying to use genetic, genealogy. To. Figure out who the perpetrator, of the crime was. And so frequently, that just looks like law enforcement. Calling up the owner, of the website, and saying hey we have this, investigation. And can we search your database, can we upload, some, crime scene dna, and try and compare, it to. The data that you already have on your site, to try and find a distant relative, perhaps, and the companies, weren't really pushing, back. Last year we saw. Um. Users on gedmatch, which is one of the bigger, genetic, genealogy. Sites start to actively, push back. And so in response. Gedmatch. Opted, out all their users, from law enforcement. Searches. And asked users to opt back in. Only about 15 percent of users opt back in opted back in to. Law enforcement, access, but that just means they opted back into. Law enforcement. Accessing, their data whenever they wanted. It doesn't mean that those people who didn't opt out weren't going to be searched, if law enforcement, got a warrant, which is what we saw. Last year. An officer in florida, got a warrant to search the entire, ged match, database. And gedmatch, felt like it had to comply with that, so i i think that's hugely, problematic. Because what law enforcement, is doing when they're searching these databases. Is they're doing the, dragnet. Searches, they don't know who they are searching, for they don't have a suspect. For their crime, and they have no reason to believe that they will find a suspect, in the database, and actually, they don't find a suspect in the database, they find a relative. Possibly. And that could be a very distant, relative. As we saw from. The the first, video that you showed. With only about two percent, of the, the white population. In these genetic genealogy. Databases. You could identify. The vast majority, of white americans. Just using the dna, data that's in there i think one of the things that you said was really interesting, when we talked earlier, and that, dna, privacy, is a collective, matter it's not just an individual. Matter. We need to think about, the privacy. Of the broader population. When we're submitting, our dna, to these kinds of sites, people in brazil. Are, also, taking those tests there are brazilian. Labs, that are entering, this kind of business. For over a decade, actually, but they're, getting cheaper and cheaper so they're getting more accessible, to uh brazilians, as well there are companies.
Like, Genera. And. Dania, that are brazilian, companies that provide, strategy. Tests. And uh for. Like 200, heis, which is the same as 40. Nowadays. Right and, paternity. Tests, for 400. Hais, which is 80. American, dollars. And it's way cheaper than it was, years ago, those are brazilian, companies, that we don't, really know if they have, or if they send the information. Abroad. But you have some companies, like. One. Company, from the south of brazil, called full dna. Which. Has, just. Gained, a price. Recently. For. Uh researchers, on coffee the 19.. They have, funds from israel. And they have, companies. That are sister companies, in portugal. In israel. And they've been, for over a decade. In the market, in brazil. And, um. They probably, have, the exchange, of material. Uh, amongst, the. The, the companies, their companies, right, those companies, they offer. And that's why they get so much. People doing the tests, because they offer. Not only ancestral. Ancestrality. Tests but also. Nutrition. Evaluations. Health, evaluations. Uh. Like the variations. Of genetic, predisposition. For, cancer. Or, lactose. Intolerance. All this kind of, health, information. That can come from your dna. But, all those benefits, are also controversial. Right. There are some risks, on the popularization. Of those kids, because. You can analyze, those results. Many times right, you can. Those companies, they follow their own protocols. To determine. Those results. So, they can have, false positives. And etc. The legislation. Is. Not very clear, about. How they managed. And the protection, data, legislation. Is getting, more strict. On these cases, but yet like in brazil for example we have the data protection, law, that says that we need to be more careful, and have more attention, to this, protection, of sensitive, data like dna, like biometric, data but, it's, it yet has to be regulated. And that's why, we need to pay attention, to this, matter, here and i think throughout the world that, um companies, can refuse, access, to the police, but then, the police can go to court, and argue it's in the public, interest, so you don't, as a customer, if you like one of these companies, you certainly never have a guarantee. That law enforcement, will not access. Your dna, or one of your relatives, dna, so that's an important thing that anyone, should be aware of if they're going to send off a sample. There are you know very different. Safeguards. In different countries, even within, the european, union. And it's down to individual, countries, some of the laws so for example, here in the uk. There is a law which makes it illegal, for me to take somebody else's dna, and send that off to one of these companies.
But That's not always. The case, we also have european. Regulation. Which isn't yet, fully implemented. It'll take a couple more years but which, will regulate, the health claims, made for the health genetic, test so, mari was telling you how, a lot of these tests are very controversial. And they can give false positives, and false negatives, telling you you're at risk when you're not and vice versa. And it's, actually very worrying that there isn't uh regulation, in most of the world to to actually check those claims. Um so the fda. Checked some claims in the u.s they did step in with 23andme. Health tests as some of you will know. But they don't always step in although they have the powers to do so, and in europe, that legislation. Is coming in which should help to. Control, the health test market. But it doesn't apply to the ancestry. Tests, which. Obviously, also have a lot of question marks, in terms of what they're really telling you about your ancestry, they're based on statistics. Again the same as. Any kind of. Algorithm. And you also, have, a long string of other kind of tests that are available, so, we've got a new website, called. Mydnawrights.org. And the commercial, dna, tests are going to be part of that we've only just set that up but there is a link there now if people want to look to some research, by somebody called dr, andelka, phillips. And she's written a whole book about these contracts, that you click on when you take one of these tests and how, legally, questionable, they are, but she also has a database. There of all the commercial, testing, that's done, and it includes. Obviously paternity. Testing, but also so-called. Relationship. Testing. Something called infidelity. Testing, which is basically. Surreptitious. Dna, testing. I think you find it quite shocking if you have a look about the kind of things. That different companies, are claiming they can tell you from your dna, what is the pandemic, accelerating. The collection, of dna, data, for health research. If so. Is this happening, in brazil. Some companies, in brazil like mandelics. Which also makes. Dna, testing. And research, institutes, like albert, einstein, which is one of the big hospitals, and the institutes, of health in brazil. Are developing. Dna. Confused, tests, that can be made also, in the same. Situation. In large. Scale. Cheaper, than, than regular, tests right mendenx, for example, is offering tests for, 95. Heis, which is cheaper much cheaper like, almost half half, of the price, of regular, tests, uh that we have from profits here. And this is also, all, submitted, to the same regulation, that we were talking, before, we actually, don't know, what kind of, usage. Would, those companies. Do, of our. Data, that we are of the sensitive, data that we, we give to them, for example, we know that companies. In brazil. And, even public, institutes. Of. Health research. Are part of being a database. Dna research, databases. Like coffee, 19 host genetic, initiative. Which, gathers, centers, of research. And, universities. And, companies, from all over the world. Even 23andme. Uh has, uh, part of, researchers. From kovidi, in big databases. And we know that there are brazilian. Institutions. That are being part of this center, it is important to understand. How our data, this sensitive, data is being, worked in this. Acceleration. Of the gathering, information, on dna. During the conflict 19., and helen there are, also.
Commercial, Interests, in, genetic, testing, for, health, issues, yeah there's a lot of influence, from commercial, companies. Um. Also in forensic, testing actually applied biosystems. As the big u.s company, which is actually lobbying, to expand. Dna, databases. Around the world often, without, sufficient, safeguards. And it's worth, knowing something of the history because i think people are aware, of the history of eugenics. What the eugenicist. Did next. Was i went to work for the tobacco, industry, and they were the people who first, argued. That you could work out who was genetically. Susceptible. To lung cancer. And only those people needed to quit smoking. And that was a big, part of lobbying, for the human genome, project was this argument, that instead of tackling, smoking. And unhealthy, diets, and pollution. You would test people's genes, and, look at the risk in people instead of, outside. So there's been a massive amount of commercial lobbying, to kind of push the research, agenda, down this genetic, agenda. Obviously, i'm not talking about rare. Disorders, where genetics, is very important but these kind of common disorders. And the idea that we should test everybody, and look at everybody's, risk. Now obviously, in addition, to that narrative. You have companies, like illumina. Which. Do most of the health testing, obviously they have a big commercial, interest, and they're one of the companies that often comes out saying. It's inevitable. Every baby, will have its genome, sequenced, at birth and this kind of thing, well obviously they want that because they're going to make a lot of money out of it but. It's not good for health. And it's not good for privacy. You have companies like google, google health you know they're interested. In, capturing, all the deep data. Um you know analyzing, it potentially. Using, it for advertising. Certainly, companies, would be very interested. In maybe, being able to tell you. Oh you're at high genetic, risk of cancer, by this, medicine, by these supplements. By this food, and you also have of course the pharmaceutical. Industry. Which would love to expand, the drug market, to, more healthy, people healthy people who don't have a disease, but who were told. Oh. You might get sick. At some point in the future because of the genes that you have, so. It is very important to be aware, of the kind of. Commercial, interests that surround, this whole area. And that are pushing, for the expansion. Of genetic, testing. Outside. Areas where it's really useful. And into areas where perhaps it's more open to commercial, exploitation. And more damaging, fuel privacy. What do we do as researchers. Activists. Caring about. Privacy. Fighting, discrimination. I think helen gave some great examples, especially, the kenya, case, and that shows i think that if, if. Human rights advocates, work together. It is possible. To to affect change, within countries, and then you know once you get a good decision, like that from uh from a country's, highest, court, you can go to other countries, and say, you know look at how kenya handled this, um there was a, there have been some good reports, from, the. U.n, high commissioner, on human rights, the. Case that helen, mentioned. About, dna. Data, collected from arrestees. I think all of those are really good examples. We are starting to challenge, the collection, of genetic, genea, or the the searches of genetic, genealogy, databases. In the court, and we are also trying to encourage, legislators. To pass laws that, would make explicit. Some. Regulations. And restrictions. On access, to these databases. But, i think that it's really, necessary. And important, for, advocates, to work together. At eff, we have a biometric. Surveillance. Mailing, list, and, if folks are interested in joining that list it's, explicitly. For advocate. And, potentially, some academics, working on these and journalists, working on these kinds of topics, and it's a great place for, sharing information. And talking about some of the victories, that people are seeing and the efforts that people are seeing in, in their own countries, there's also a a digital, rights, litigators. Network. That is a sort of a global, group, um, that i can, give people information, on and and this is a way to connect with, lawyers in other countries, who are trying to, litigate, these kinds of issues, so i mentioned, our. Dnapolicyinitiative.org. Website. And there's a wiki on there with what's going on in different countries, but obviously we're a small organization. So we really, rely on people.
Telling Us as well so if you want help, in your country because you know police dna, database, is going to be set up and you're concerned about the safeguards. Please, please, get in touch with us via that website, and we'll be able to help you we can talk about best practice. And the kind of safeguards, that can be in that law and we have made a difference, i've, i've given you the sort of more. Um extreme examples, but there are lots of other countries, where we've made a difference on who actually goes on the database. And the kind of safeguards, that are in there there is a beautiful, thing about the research, on dna. That there are many advances, that we can reach on the research of dna but there are also risks. And, as we, are discussing. The whole thing of the data protection, law here in brazil, which is important, to, raise all these questions. So we can, advocate. Together with uh civil society, organizations. Even with the public. Uh people have to know about. What they're exposing, of themselves, when they take, ancestrality. Tests paternity. Test where their information, is going. So this was a very enlightening. Uh so thank everybody, for the. Participation. You.