(This transcript is machine translated. We'll get an edited version up as soon as possible!)
[0:06] I'm David Torcivia.
[0:09] I'm Daniel Forkner.
[0:10] And this is Ashes Ashes, a show about systemic issues, cracks in civilization, collapse of the environment, and if we're unlucky the end of the world.
[0:20] But if we learn from all of this, maybe we can stop that. The world might be broken, but it doesn't have to be.
[0:40] In late 2016 a man escaped his burning home in Ohio after Gathering his heart pump and a few other belongings. A 59 year old man with a pacemaker the police did not believe that Ross could have escaped his house in time unless he had started the fire himself. So a judge allow the authorities to retrieve the data in his pacemaker. They had a cardiologist look at the data and they concluded that based on his heart rhythm at the time of the fire you could not have possibly run out of the house so Ross was charged with arson and insurance fraud. And since then the Middleton Ohio police have been granted warrants for pacemaker data at least a couple of times to build investigations against suspects. And this fact to give a spot.
[1:31] Millions of people are walking around everyday with medical devices in or around their bodies when there's an insulin pump a pacemaker like Ross a small computer chip in their brain to regulate something like Parkinson's disease, or something more obvious like a prosthetic limb most of these devices now Store electronic data. And many even transmit this data wirelessly the healthcare providers and insurance companies and when it comes to data that is so intimate to our personal health and a very way our bodies work and function. Most of us probably find the idea people peering into that information incredibly intrusive and unethical even if it's in the service of an official search warrant for police investigation. But in fact we live in a world today where are very personal medical and health related data is open for the world to see. And the veneer of privacy starts to fade as we begin to see just the tip of marketers retailers analytics companies intelligence institutions and more that are all getting their hands on the very fabric of Who We Are. Yeah.
[2:37] But David it's not just medical devices that are acquiring data on our personal health may consider all the devices we have around us today that are collecting this data from are fitness trackers are diet trackers are SmartWatches are cell phone and countless many more apps and services that we use everyday.
[2:58] I was actually just working on some advertisements Daniel.
[3:01] Not Again David come on.
[3:02] I know I feel super guilty but here I am anyway I was working on these ads they were for Phillips and Phillips has a whole bunch of new products that are medical technology ways of living your life products. Like things that will keep you from snoring sleep apnea devices things that will help you dream specific ways. And all of these things are associated with apps that will send data back to Phillips or presumably also your doctor and that data is of course very valuable abilities of course not the only company doing this Nokia Withings all these health.
[3:36] Companies have products that are just sitting there watching you all the time and taking this data throwing it up into the clouds somewhere and then who knows what happens to it after that data is gone and out of your control, I mean we're talking things that light underneath your mattress that detect higher sweeping things are looking at the air in your room environment around you even the way that you toss and turn in your sleep. Blood pressure talking heart rhythm there's a whole bunch of new SmartWatches that will not only read the pulse of your heart but if you put your hand on it it will actually tell you the exact, electrocardiogram of your heart which can be used to diagnose arrhythmia another thing all these amazing Technologies, which should be an exciting time for ourselves taking our personal health into our own hand instead of having to constantly lay that off on a medical doctor except for this Cloud that hangs over our heads which is quite literally the computer Cloud where all this data is sent uploaded, and then at that point interest is Black Box in our privacy will it goes away with it.
[4:38] That's a scary thought and in some places this is taken to an extreme David where people are not simply wearing devices or using the temporarily but in Sweden for example over 4,000 people at this point have gotten.
[5:06] Store by swiping your finger some people have linked it with their smartphone apps so that instead of giving you my phone never let me just tap your phone and now you have all my information people are using it to get into their apartment without a key train stations are taking this instead of requiring a ticket. And it's another thing that we're introducing into our lives to make our day today more convenient but associated with all this like you mentioned is electronic data, and when it comes to our personal health, the things that really make up who we are that's the type of data we would want the most security surrounding it right David I mean that's the thing that we want to be most private. We're finding that that's not always the case.
[5:51] Will Daniel what is more personally identifiable in the very DNA that makes us. And defines who we are as individuals and biological entities, and I can never talk about DNA without having that little song from Jurassic Park Dino DNA playing my head you know what I'm talking about.
[6:22] Yeah I know what you're talking about David.
[6:24] With that aside. Will it right now thanks to Modern DNA sequencing technology we are sitting at a very exciting time in our personal health and defining and learning we are and that's made possible by this very affordable DNA sequencing technology.
[6:41] That's right I actually have some friends who for Christmas they received a product from 23andMe came in a little box and, inside that box are components that you can spit into and then ship off to the company that will sequence your DNA and tell you where you're from or tell you your you know your genealogy Bradley in terms of race and ancestry and help you fill out that family tree if you have more data.
[7:07] Yes we've all seen the 23andMe or ancestry DNA test kits that have been a popular gift for the past few years and bought some of those are limited to specifically whatever random genealogy thing you're looking for if you want to find out exactly what 0% you are Native American actually these tests I guess can enable that put some of the higher and offerings of these including products from 23andMe also offer health information with this data and I can give you valuable insights to your health things like you carry the gene that makes you more susceptible to breast cancer in which case you should get more frequent mammograms and get them earlier these types of information can be used to empower your health and there is something valuable there what does also means that in order to give you the detail inside into your hell that companies like 23andMe have to store your DNA in their servers, that means somewhere there's a file, if you spit in this to mail it off and paid your $99 or $150 or whatever it is there's a file floating in this digital cloud. Is your genetic code who you are and that information can be extremely valuable.
[8:15] When I think that reality is is unsettling for some people and I was actually proud of my friends and I didn't really say much when they told me they received this 23andMe product I was kind of okay but a couple weeks later I asked them hey did you ever get that done and they actually said you know what we decided not to we thought about it and the idea of. Putting our genetic information in the hands of some company that might use it against us was unsettling we decided not to do it and it and that's the reality is that many people are waking up to the fact. Companies like 23 and me and ancestry.com will they have a history of selling that genetic information to Pharmaceuticals another companies and if there was any doubt about that last year one of the largest pharmaceutical companies GlaxoSmithKline invested 300 million dollars in 23andMe as part of a four-year partnership. That will give the pharmaceutical more direct access to the genetic profiles of millions of people part of which is to develop new drugs with, maybe will benefit from David but who knows what other nefarious purposes they might want with that data that could come back to harm us but the listener this do this now that you say but Daniel and David that data is an itemized. Oh really well we'll get to that.
[9:31] This is my big hypocritical admission Daniel I actually have done the 23andMe years ago I did it after my parents decided they wanted to do it in that that case my DNA is done. He already would have known who I was exactly I had no more genetic information left to. So I spin the tube and now I know a bunch of help traits about myself.
[9:56] Was it worth it David was interesting.
[9:58] No I mean the ancestry stuff is like totally ridiculous and questionable at best but just some interesting health things I know I don't have to worry so much about some stuff so I think at some point in this episode of particular lot of these Technologies do have value for their users it's just the way that this data is ultimately used. Trees these are stressed and the Privacy that we feel like we should have with our data if we're giving somebody permission to take it open times, we don't even realize what's being done with it our house being taken where that is being taken at all the first place and I will stay in 23andMe defense this research data is opt-in which is nice if someone is going to be violating your privacy you should have to opt into that so that is a good step forward of course though everyone cook that box box basically just like you check a box at the DMV when you want to donate organs I mean who's going to knock donate organs unless you have some religious reason the same is taking place here at like all of course I'll give my DNA for science I'm going to do some good.
[11:04] But of course so many companies their terms of service it's not really optional I mean I guess you could call it often in the fact that you you have to agree to it to use the product but for many of these Services is not like you could use the service and not agree to the terms of service eat a take-it-or-leave-it proposition.
[11:19] Right well I mean this is specifically in sharing your data for third-party research because they do different things depending on where your data's Warehouse you can ask him to delete it. All these services are created equally ancestry and their kids are much more privacy invasive than 23andMe, there are other ones you can pay much more for because in a business model is just profiting off of sequencing and not selling your data those options are out there as well so you can take this data and get it into your hands without having to sacrifice privacy but you're going to be paying for it because a lot of times this this is always that trade up that we come to convenience, Coston Escape in exchange for your privacy and data.
[11:56] Writing and talking about genetic information talking about the companies behind them and talking about convenience David, how about we look for a minute at companies and their direct relation with their employees and how many companies create pressure for employees to partake in, programs that ultimately Harvest their personal medical and health related data. It's so it's no surprise that more and more companies today are asking their employees to participate in these types of programs including.
[12:42] Many are beginning to financially penalize those who do and who do not participate in many of these programs. But sticking with genetic information for minute David there was a bill that was introduced into the u.s. Congress in 2017 it was approved by the house committee on education and the workforce it's HR one three one three, and in December it was discharged by the other two committees which means that it will go straight to the floor of Congress to be considered and as far as I can tell no further action has been taken yet but it remains open for consideration, and what this bill would do is allow employers to collect the DNA other employees directly as part of their voluntary, Wellness programs is it like I mentioned many companies offer these Wellness programs which are aimed at improving the health of their employees so that they can lower Health cost and although they are voluntary there are great financial incentives and other benefits tied to participation towing companies that offer employer-sponsored insurance plans for example if you don't participate in a wellness program it could mean paying substantially more on your health insurance premiums as much as $1,500 or more. This bill were to pass it means the employees who refused to give out their genetic information would be faced with this financial trade off.
[14:04] But wait you're screaming into the void right now David and Daniel you wrong and United States I know that there's a bill that protects our genetic health information.
[14:13] The hippopotamus law.
[14:14] The hippopotamus law no it's not Daniel it is actually a 2008 genetic Privacy Law also known as Gina, or the genetic information nondiscrimination act that's a mouthful I can see why they call it Gina. And what this law does basically is preventing companies from discriminating you based on your genetic data simple enough because these Wellness programs that we talked about in HR 1313. Voluntary is Gina law in fact doesn't apply. But again when there are Financial consequences in the thousands of dollars for not participating can you really call something volunteering. And that raises the question why do employers want this information in the first.
[14:57] What's a good question and again did Aziz Wellness programs is that if you can modify the lifestyles of urine.
[15:10] Better diets more frequent Health screenings then from a business perspective you might lower the occurrence of lifestyle-related diseases which means you can negotiate for lower-cost insurance plans and you'll have fewer payouts to assist these employees when they have health issues 85% of large companies that offer employer-sponsored health insurance also offer he's Wellness programs and what participation in the looks like depends on the company and in some cases it depends on the health of the individual, there's one company that has a different program for employees with diabetes than those who don't and for those that do have diabetes the company offers a 30% discount on insurance premiums if you lose weight keep your blood sugar down, or visit the gym at least 10 times each month and that 30% discount by the way amounts to $1,400 a year for individuals, add as proponents of the collection of genetic information rightfully point out, employers with access to their employees DNA could get even lower rates from insurance companies which they are used because it allows companies to identify particular health risks and offer preventive methods early, the opponents of this argue that it is just another insight into the lives of individuals that could be used to discriminate against them. And but I wouldn't you know I think it also raises a question David of why are we putting our personal health into the hands of those assigner paycheck it seems like it's really unrelated.
[16:40] Well I got a lot of thoughts on that and then I'm going to get to that in a minute but first I really want to address these Wellness programs because you know what on paper bet you don't sound so bad right okay so I'm a company I want my employees to be healthy so that they can be productive so they can make me as much money as possible I don't have to constantly a bunch of insurance for them I have them out of work you know whatever.
[17:02] Especially if they work in something like a coal mine you want them to be strong and fit.
[17:07] And not filing class-action lawsuits against me so I have a huge motivation to keep my employees healthy and if I can have a program that encourages you to be healthy well you know that sounds like a great deal these Wellness programs have really come into Vogue and there really a growing a lot of companies are there billions of dollars poured into these companies every year but the big problem with these Wellness programs it's a fact that they actually don't work at all.
[17:32] You mean they don't lower insurance premiums for companies.
[17:35] In fact the end up costing companies more money because they're paying for these Wellness programs in addition to a regular insurance premiums they don't keep their employees healthier, the employees that actually enroll in the wellness programs often times 10 to cost more for insurance and those who do not and in fact every single measure of success for these wellness program has fallen flat and in many cases found the exact opposite is occurring and this is not just in one city but in many studies and there's some very long-term studies going on right now who have so far found that yes these programs are huge failure but they are still continuing and I don't know the reason is because businesses are just, in denial about this and because I want to be the CEO of whoever has this great program to take care of my employees quit because there's something more Insidious Happening Here Daniel like you've alluded.
[18:23] Absolutely Dave I think that's kind of the theme of this episode we what we're talking about is medical surveillance and. While the idea behind medical surveillance that you can lower insurance premiums and help people out identifying health risks at the end of the day it's, mostly incentivize by the fact that that information is extremely valuable from a marketer or a data analytics company standpoint where the more you can know about a person's lifestyle, the more ammunition you have to Target particular vulnerabilities or Target certain risks exclude them if you don't like certain lifestyles of the exhibit. And we see what these company Wellness programs that these initiatives, are often managed by third-party company so these are third parties that are collecting your personal health information on behalf of the company that hired them but these third-party companies are unregulated they often sell this data two other companies to the highest bidder and it's all part of a massive Wellness industry right now that is growing at a rapid clip and its trying to consolidate the market for technologies that can collected on every part of your life activity.
[19:31] Before we move on to all of this data what it is where it's going down I really want to focus just one moment on something we say that moment ago and this idea of control because others data that helped data is used for control but as you know we spend a lot of time on this show discussing Healthcare Medical Care all these things would be a very long three part series on the American Healthcare System douds.
[19:53] Episodes 45 to 47.
[19:56] Which we highly encourage you to check out, we love them that our Healthcare and this isn't particularly in the United States or we do not have a form of universal health care where we think is provided by individual companies either by the company you work for something you purchased from another company. Is used to control us as individual.
[20:17] What can you give us an example David of of what companies might be trying to control through these types of programs.
[20:23] Let's quickly lose look at this thing about Universal Health Care two political words in the United States Universal Health Care or Medicare for all whatever it is you want to call it a program where everyone has insurance and is automatically covered and it is covered by the government instead of the private healthcare companies, today is dirty commie words we're not participating in the free market or whatever.
[20:47] Okay I'm imagining it.
[20:48] Okay you're imagining it right now this is something we should state that a vast majority of Americans want it depends on what you're looking at but over 60% of Americans Wampus with Democrats very very high and we even the Republicans surprisingly it's high and getting higher this is a very popular idea we seen it work all over the world, so many other places in the world have much lower health care costs and Better Health Care treatment than the United States, Eyeworks we have the most inefficient healthcare system in the world by a long shot so you go America so why is this the case.
[21:22] Yeah so tell me so tell me why companies then wouldn't want this when they're paying more to ostensibly lower Health costs of their employees but it's not working why wouldn't companies want this then.
[21:33] It's a good question and it's an important question remember here because companies are paying a huge amount out-of-pocket to cover our Healthcare if we're lucky enough to be working for a company that gives us health insurance your costume company is probably 20 to 40% higher than just your salary and it's because of taxes and this is in large part because of that healthcare costs he's very expensive for his company to be providing us all the health care so why aren't they clamoring Lobby talking to all of the politicians they have in their pockets say please passes universal healthcare save us trillions of dollars a year in healthcare costs that's a good question. Stockholders should be asking this right now and the reason why Daniel is because health insurance has become a huge bargaining chip to control labor in the same way that pensions were decades ago as we talked about in the past.
[22:24] Episode 10 broken promises.
[22:26] So then I imagine you are working at a company you hate it but they have great health insurance will you also have a family you have a child and your child is sick. They have some illness that not getting better you have to take care of them you desperately want to quit this company. Your partner they don't work your child is sick are you going to risk leaving this company to find somewhere else that you would like much better that could maybe pay you more money but would have worse health insurance or worse. Bill to find a new job or even after you get accepted at falls through the last minute you find yourself with no health insurance and stick family are you going to look for something else in that case.
[23:05] That's a great point I think. When faced with that type of pressure light pay I have a steady job is paying for my health is paying for the health insurance for my family you know maybe I don't like it but why go through the hassle of moving somewhere if there's a chance that I'm going to be months without health insurance. And I mean especially considering how expensive it is we've already mentioned that medical bankruptcy in the United States is the number one cause of bankruptcy cross the board and that's for people that you even have insurance it's extremely expensive enough to have an employer help pay for that is a true burden off so many people's shoulders. Yeah you might be onto something.
[23:42] Exactly this private insurance scheme is something that keeps the job market as a liquid as possible and employers benefit hugely when it's a huge burden for an employee to move to a new company the harder they can make that process the more likely they can hang on to you for longer at lower wages and take advantage of you and exploit you in other ways, this is why we're not seeing universal healthcare despite a majority of Americans desperately asking for it which is something is if I was a politician running for president or something else I'd say blow ya course I'm going to support this most people want it but the fact that so few are even on the Democratic side with something like seventy to 80% of Democrats want a Medicare for all Universal Health Care Program employed these Party leaders are still saying No this is never going to happen. And I wonder why I put David you're saying you were getting way off topic but this theme of control in our health is something that is very important and is very closely related 2 is surveillance that we're seeing in our medical data and the medical devices that we see around our life.
[24:43] There's no doubt that this wellness program industry despite losing money for companies is growing like I mention it's an 8 billion dollar industry in the US it's expanding, in particularly of note is that many companies are expanding their Wellness programs Beyond just the medical so they want a monitor not just your physical health.
[25:02] Your financial security your social activity all so that they can track and modify the behavior of other employees into favorable ones, in some cases by using software that automatically delivers incentives to employees based on their behavior something out of episode plugged in that we talked about. According to Fast Company the founder of pure fit a startup that connects employers with fitness centers says he quote predicts that in five years data driven incentives will be the norm based on employees locations and personal preferences, wearables will track certain aspects While others will be driven by employee need some Employee Engagement platform such as you earned it integrate Wellness incentives with other Employee Engagement activities so workers can earn points that can be redeemed for prizes this type of game of the keishin also increases the amount of data the employer and third parties have to work with, in quote there's another startup founder from the same article Who highlights the ways companies can track employee financial behavior, he says quote for example if you have a lot of people taking 401K loans and hardship withdrawals for non housing reasons.
[26:13] That tells you that they're having Financial issues I mean that's pretty obvious but the idea is that the company is the one monitoring that I guess ostensibly so that the company can help them with their financial issues, but it's not hard to see despite how companies spend this that these employers. Want to see into every aspect of their employees private lives because I kissed a tremendous power to discriminate, to penalize to fire to ultimately control their work for it because they hold the fundamental carrot that everyone needs a paycheck.
[26:49] But we also mentioned how this date is managed by Third parties who can ultimately sell off all of it and it's another big piece of this story. Why yes there is the Insidious infrastructure being built to enable companies to directly control our private lives this date is also valuable to the old-school industry of Market.
[27:10] The holdup David let's take a step back here for a minute because we're talking about all this data that companies collect they sell off and all this pain. As many people will point out and like we alluded to with the 23andMe genetic information much of the stated that is harvested on us, is anonymous and companies tell us that they say yes okay we collect a lot of information on you we do sell that to marketers, but we strip that information of your personal name no one can trace it back to you it's just for research purposes it's just to help us improve our services you hear that one a lot, hey do you mind sharing your information with us it will help us provide better services to you but is this something we can trust it should this give us peace of mind. Or should we give it a piece of our mind.
[27:56] Daniel it's true most personal health information is supposed to be stripped, personal identifiers before it gets sold to companies on the open market the fact that are healthy it is sold at all something we should all care about but at least these companies are not a mais Bonita so can't be tracked back to you or me. At least that's the idea but as always in the show at idea turns out to be completely wrong, there was a study published just last month by UC Berkeley foreign since that used machine learning to identify individuals from anonymized data on their physical activity specifically researchers got just one week's worth of Walking Dead from 15,000 individuals about 10,000 were told to not 5,000 more children that came from wearables like there anime use machine learning to match the data to specific individuals. 80% accuracy for children and 95% accuracy with adults.
[28:52] I just threw my Fitbit on the ground David.
[28:54] Smashed it into dust Daniel that's what you should be doing I hope everyone does that by the end of this this episode but the lead author of the study wrote about their findings. The results point out a major problem if you strip all the identifying information it doesn't protect you as much as you. Someone else can come back and put it all back together if they have the right kind of information, in principle you could imagine Facebook Gathering step data from the app on your smartphone been buying Healthcare data from another company and matching the two, now that would have Healthcare data that's some batch two names and I can either start selling Advertising based on that where they could sell the data to others and quote. Ultimately the authors argue that artificial intelligence is making it easier for companies to connect us with our private data and then our privacy laws are much too. To protect our health records for marketers and those with even more nefarious purposes.
[29:48] Dude I was thinking about this issue how companies anonymize our data and I came out with a hot take in.
[29:54] Lay it on me.
[29:55] The more the more I thought about it the more I realized there is no such thing as anonymized data.
[29:59] Now you know you're onto something here Daniel.
[30:02] The concept is is a contradiction doesn't make sense. Yeah I mean is something that companies say they do and I guess it's supposed to make us feel good like we imagine she knew all the data about our life just goes through some giant scrambling machine comes out the other side clean. But if you think about it if data was truly Anonymous it's not useful you can't use it for anything a truly Anonymous piece of data would be something like there was a woman because that's an honest. The moment I start trying to connect that data point to something else.
[30:41] Time that this woman walk into the store right I might have a purchase history and while these companies drip certain information like okay we know there was a woman who walks into a store who purchased a certain thing but we took her name off of it, the whole reason why this is a problem though is that these data points don't exist in isolation they are connected to other bits of information that's exactly what these data Brokers exist to do they harvest data from your doctor visit then they harvest information from your Fitbit then they harvest information from your phone app where you input is your diet then they harvest information that we share with your insurance company and even though each bit of this data may have removed your name by connecting the dots you have location you have zip code you might have a phone number you might have the last four digits of a credit card is very easy to start connect he's not to say okay we have the person. In fact David there is a Bazaar, mask off illustration of how ridiculous it truly is to trust Anonymous data and to listen to this okay.
[31:42] You can't see me Daniel but I'm rubbing my hands together in eager anticipation let's hear.
[31:48] Last year Facebook.
[31:49] It's going to be good I know.
[31:51] The social media company was talking to hospitals in an effort to start up a project that would match anonymous Facebook profiles with Anonymous medical information in order to identify people. Facebook a short people that in this process the company would not quote D anonymize the data.
[32:11] Wait wait a second and Anonymous a lot here.
[32:15] It's a let me let me clarify for you David Facebook is telling its users that may we have your profile but it's not in my.
[32:31] If I take mine out of my eyes data and connected with your Anonymous data now we can identify people and provide services to them. I mean it's a it's a complete farce but I mean what kind of crazy world do we live in where companies can actually advertise for that type of thing. But it does point out the false reality of so-called Anonymous data.
[32:53] When I really love about this is that it's almost word-for-word exactly what the researcher in that study warned about, companies like Facebook doing and it here it is an actual plan that Facebook came up with what this kind of stuff happens all the time according to propublica and NPR there's this company called. It has compiled data on over 150 million Americans going more than 25 years back, this includes a medical diagnosis medical test the drugs they take even things like their socio-economic data, company that takes all of this and connect that with other data on individual education their race and family in 2016 the company filed for patent on a technique linking people's social media post with details from Clinical visits and payments pick up the claims the anonymous this data there's that word again, but as we've come to learn you have to be joking you can't tell me that would that many data points on individual and that you can't identify them, it's like if you and me were sitting there room Daniel and some of the person said I'm thinking about a person and I'm not naming any names but they're in this room they're wearing brown shoes they have brown eyes if they're six feet tall to have a red shirt on but I'm not naming any names.
[34:05] Yeah they said they wouldn't be naming any names.
[34:06] It reminds me of the scene from The Simpsons Daniel and they don't want to let the classmates know who it was who they say well let's just say it's L Simpson Wait no that's too easy maybe Lisa s.
[34:19] Yeah exactly and to be clear this information that propublica and NPR reports on this company Autumn they got that from their marketing material it's not like secret there there was a convention, or medical health professionals where they could meet all these data analytics companies and peruse their services in this was one at just one of the many companies that says hey this is all the day that I got we can do something with it past but we've been talking about a lot of markers on physical health David known things that companies want to know about our lifestyle habits and all this but, this starts to get disturbing when we realize that one of the main goals of all this activity into crying into our private lives. Is to figure out what are individual mental and emotional states are, it is these companies these social media conglomerates Facebook Google. What they want to do is diagnose us themselves with mental health issues and other mental diagnosis. This starts to get a little disturbing David.
[35:23] A number of large companies are currently pursuing technologies that will enable them to track the mental health if you guessed it all of us. Google IBM Apple all these companies have departments dedicated to finding connections between individual behaviors and the expression, of our mental health disorders, companies are looking at our browser search history our shopping habits are mobile phone use the results from our wearable fitbit's and other devices all to identify as early as possible what are mental and emotional states. This research is driven by the assumption that when it comes to things like depression, the best way to monitor its occurrence is through the tracking of real-time Behavior because social changes in our habits can yield profound insights into our emotions, for example companies are trying to find ways to turn our mobile phone microphone hated tools for detecting changes in our very own voice pad. Maybe yesterday spoke with enthusiasm to those around you but today your voice betrays in inner insecurity and uncertainty and that's the type of Intel companies want to know.
[36:30] It didn't take long for Watson to go from lovable game show contestant 2 evil. And one of these departments that I want to highlight David is called verily Life Sciences it's owned by Google. There's one individual his name is Tom and sell used to be an executive it fairly, but then he left for a startup called mine strong mind strong of course is a hot new startup and just recently surpassed 29 million dollars in funding, and it aims to use smartphones to identify mental health markers this company offers software for health providers and by extension Health insurers, on an individual 24/7 activity on their smartphone, and the analytics behind all that activity is provided by Machine learning on what that activity May signal about, a person's mental health and we talked about company Wellness programs and how voluntary doesn't necessarily mean voluntary with her our financial consequences for not participating and software like the ones being developed by mine strong, are the perfect type of tool that could be easily forced upon people either directly by an employer. Indirectly by health insurance plans that can adjust premiums based on participation.
[37:46] Building of the really illustrate these ideas let's look at specifically what Tom and sell the founder of this company mine strong is bragging about in terms of his technology. So this is an article from wired. Thomas pursuing the idea that a combination of your medical records and how you use your gadgets tracking of activity correlating with depression or future self harm let's say could be a big data Bonanza for predicting and treating health issues, for a bipolar patient who is Minnie as manifested in Rapid uninterruptible speech or hypergraphia their disease could be characterized by the frequency of length and content participation social media write the researchers who defines the term in nature biotechnology and quote. Thompson sales company mine strong is trying to figure out how the way we type on our cell phones correlates with depression psychosis and Mania. According to Intel himself quote. The complication is developing the behavioral features that are actionable and informative looking at speed looking at latency or keystrokes looking at are all of those things could prove to be in.
[38:52] David that's that's terrifying to be clear he is saying that they want to look at not just what you type, but how fast you type it errors in spelling and grammar that you might make how quickly your thumbs move today vs yesterday. And on and on and at this point we have to take a step back and ask like what the fuck I remember in an earlier privacy episode I think it was, permanent record we discussed how technology is being deployed in Southeast Asia, to exclude individuals from Financial Services based on their spelling abilities when they send text messages and how that type of Technology often developed by Western companies would one day come home to Hunter as well and that's exactly what this is. I'm going to be honest with you David I really do not understand how we live in a society today where companies can openly brag about their efforts to track. Intimate cell phone use our intimate lifestyle behaviors all so that they can label us with a mental disorder so that companies can profit by excluding us from certain services or otherwise, even worse manipulating us when we are in a vulnerable state because they know that we are susceptible in those moments to their advances it's really it's really sick if you ask me.
[40:07] But it shouldn't be surprising Daniel I mean look at all the funding it's going to be the company's all the investment the tapping in this area I mean there are millions billions of dollars being poured into this technology and that money and then investors eyes is something that's going to be made back and how are they going to make that money back not by making sure that they're taking care of all of our help with some of that cost money and that's a service if these companies are providing but instead by either selling data on how we're feeling physically emotionally whatever which something advertisers can take advantage of. Or selling our data or help data in order to deny us things, when it's better terms on things like loans maybe access to plane rides like we're seeing right now in China with the social credit system you use to actively deny people Transportation around their own domestic country, or ultimately something more Sinister something like genocide.
[41:02] We really have to deposit take a step back in a skit what are we building here what are we allowing our Tech entrepreneurs are companies to construct. When an entire company or an institution or government can pull back the veil on its entire population and identify these are the people with depression these are the people that are at risk for this disease these These are the individual.
[41:34] Are we really going to believe. This PR take that all this is for our benefit but all this is in our interest that these companies are breaking their back to learn every detail about our lives so that they can make it better. Do we have historical examples that we learn about in school of of atrocities involving genocide like you mentioned David discrimination Jim Crow slavery in American South, we learn about internment camps concentration camps all these terrible atrocious, things that occur where an institution identifies a group of people based on some physical trait or some social class and then physically forces them into a way of life.
[42:16] But we are building an infrastructure that word is important infrastructure think of the roads that we walk down or drive down today or better yet the train tracks that we traversed when we get on the light rail system.
[42:30] The infrastructure where building is giving over the power to these institutions to achieve the exact same effects of those violent physical exclusions of whole peoples that we learn about, except missing will be the visceral a direct use of physical force and missing will be the direct visualization of that taking place, when every part of an individual's life can be digitized and track you don't need to round people up with guns you simply adjust behind-the-scenes what roads of society are open to them. You've been identified as a person at risk for depression, well maybe when you go to search for job openings or apartment vacancies your computer merely hide certain opportunities without your knowledge, and so directs you to a certain part of town, you've been identified as having diabetes will then maybe when you go to apply for a mortgage loan online and online is probably the most likely way that you'll get a mortgage is everything becomes automated. Maybe those mortgages that will be presented to you. Will be too expensive for certain zip codes I mean after all diabetes is a pretty good proxy for race and if you wanted to exclude a certain race from a part of town just increase the cost of alone. When they go to apply and they will never know.
[43:47] Or we could just listen to executive editor of politics for the telegraph James Creek up riding in 2015. Yeah we now live in a world where your phone might observe you to help assess your mental health, but that feeling of unease should not determine our response to technology and mental health in fact we should embrace and encourage the tech Giant's they seek to chart the mind and its realities albeit on the condition that we can overcome the enormous challenge of devising rules and regulations protecting privacy and consent. If you think the idea of Google assessing your State of Mind in your phone monitoring you for depression is worrying right but what's more worrying is that allowing these things is the least bad option on Mental Health.
[44:29] And if it doesn't come across that clear David what he's telling us is, yes these Tech Giants are invading our lives but we should welcome that we should embrace it because they're providing insights and without that Insight life might be a lot worse. Now he's riding from the UK and in his article he does mention Britain's National Health Service the NHS, as one of the parties responsible for implementing the types of rules and regulations that I assume we'll just emerged out of thin air and and this is particularly ironic considering Google has already proven itself to be outside the control of the NHS or any local governmental body, and that example comes from Google's previous subsidiary company deepmind health.
[45:15] What's the name like that definitely got to be all good right well deepmind offers a service called streams to healthcare providers any ideas that by centralizing a patient's personal medical data in one place artificial intelligence can be used to identify when a patient needs immediate attention from a particular nurse I hope to be warning signs for fatal incidents of sepsis or kidney failure can you recognize early enough to prevent.
[45:41] I'm on board so far.
[45:43] It sounds good right there's nothing nothing bad here yet may concern from NHS however was that Google could use this highly sensitive personal health data to violate people's privacy. And profit off their conditions and that's why it is just me deepmind and Google both agree to keep the data separate from Google only in the hands of Deep Mind itself and appoint an independent board to oversee the handling of this information. In 2016 deepmind co-founder wrote quote we've been clear from the outset that at no stage will patient date it ever be linked or associated with Google accounts products or services. In quote well last November Google announced it was acquiring deepmind Health in full and making a. Part of Google proper in the process Google dismantled the independent review board. Silverstein here is that Google use the promise of privacy to persuade the UK government to allow a subsidiary company to acquire that patient data, and then once the service was established broke that Promise by integrating the company anyway and taking full control of all that patient information, this is a perfect case study of the dangers of giving our date away to companies on the assumption that they will be good stewards and they won't abused the power that we gave them.
[46:57] Noel Google still pretends that it protects that data many other companies are just delivered about sucking up as much data on us as possible, Health insurers are notorious for this and so far we've been discussing data on our health specifically and this is kind of the flip side of this work Health insurers don't want to just know your health data. Everything about you how fast you drive your car how much water you drink in a day how long you spend watching TV what you order at restaurants how often you go out to the bar how much money you have if you're single or in a relationship what you post to Facebook. All this data they want so they can calculate risk profiles on you and then charge you more on your premiums, once again he was from a great propublica report where they they highlight how this information is used practically by health insurance. Are you a woman who recently changed your name you could be newly married and have. Pricey pregnancy pending or maybe you're stressed and anxious from a recent divorce that to the computer model predicts may run up your medical bills.
[47:59] Or are you a woman who's purchased plus size clothing your considered at risk of depression Mental Health Care can be expensive. Or low income and a minority will that means the date of Brokers say you are more likely to live in a dilapidated and dangerous neighborhood increasing your health risks. And this goes on because as we've discussed at length on the insurance Market in the American Health System. Specifically episode 45 bill of health insurance companies compete with one another by identifying the healthiest members of the population and excluding everyone else from their services, they want more and more data, because that's what's going to give them to Competitive Edge over other companies and it's what's going to an able then to figure out that they don't want to cover you anymore at least not for a price you can afford.
[48:47] Virginia would not just talking about negative health effects here is some of this data that these companies are sucking in and turning into valuable information, should be something that we see is positive and this is especially the case when it comes to pregnancy and now there's so much stuff here with pregnancy that we really want to touch on in fact we're planning on having a future episode that's all about the politics and privacy a pregnancy it's a really interesting topic we can't wait to explore in depth, but we want to touch and some of the here because it's really important. Fact of the matter is is as soon as you get pregnant you are worth a lot of money or even before that if you're trying to get pregnant you're worth a lot of money, because a pregnant woman is suing to become a regular woman plus one child and that child and that woman are worth tens of thousands if not hundreds of thousands of dollars over the next 20 or so years of their life, and this is an important market and this is how they talk about as a market for advertisers to capture and sell to the retailers that employed, so it's natural that from this process. App makers in particular are desperate to get information that they can about you as a pregnant woman to turn around and sell to these advertising companies, literally everything that can be tracked if you're trying to get pregnant or are pregnant is being tracked.
[50:04] Let me give you some examples cuz there's a journalist Kashmir Hill who wrote an excellent report on this she actually, took one for the team yes you got pregnant and then decided to track how these apps were you using her data. And it began even before she got pregnant when she was just trying. She writes that they ask me about my mood when and how I was having sex whether it was painful my weight whether I exercised whether I got wasted or smoke. And of course whether I was having a. And how heavy it was and these questions are of course coming from apps that you downloaded they're supposed to help her get pregnant, and according to the representative of one app that's really popular called glow, both for trying and pregnant women this representative says rather than look just at. Start in date and cycle length in order to figure out the right day of ovulation, we examine the result of ovulation predictor kits the consistency of your cervical mucus your basal body temperature as well as a multitude of other symptoms like cramping bloating anxiety stress in the glow app your predicted ovulation day and fertility window changes as you enter this data, and the Apple earns from heat cycle becoming smarter and more accurate for an individual woman's next cycle.
[51:19] They said machine learning coming in to try and pull our privacy away in the sake of convenience.
[51:25] And when Kashmir Hill was finally pregnant she writes that when interacting with these apps quote I reported what I was feeling each day analog tracking my nausea my weight my appetite feelings of movement, loading and on and on I found the apps oddly addictive when you're conducting a human science experiment inside of yourself it's comforting to get updates on what's Happening.
[51:48] Willow this is a lot of data you can very quickly see what how that data is collected and used is where the story gets really interesting, someone popular app called what to expect is actually owned now by Tech company but a media company and as soon as a woman create a profile within this sap the company sells her email and her information to marketers and companies. Pottery Barn and Huggies one user of the app had a miscarriage delete her profile but nonetheless received a congratulatory package of baby formula in the mail the week she would have given birth sent by third-party retailer. It was worst much of this information is not stored anywhere close to securely many apps have discussion boards forums you can just a page for personal notes that all of my few to write the details of your experience is like a diary but it is can be read by anyone willing to pay for. Mini apps weren't using encryption to send my information along to their servers that means the women writing in the apps message forms about the weird things happened to their bodies or how many times they've been raped, which unfortunately is striking common conversation the form could have had their messages intercepted by someone sharing their Wi-Fi network providing their internet service and thanks to Congress recently overturning privacy rules for isps best information that Comcast Verizon or Time Warner for example could hypothetically collect, can you set Target those women with ads and quote.
[53:11] In addition every app that tracks a woman's. Is complicit in selling the data sheet answers to social media companies data analytics companies marketers and much more even more worrying journalist Kashmir Hill was also able to find out that the app glow that when we mentioned earlier that she was using even sent her cell phone's unique serial number so they call the IMEI to an app company meaning anyone with that serial number can track the phone even in the real world even if the phone is factory reset.
[53:39] As Kashmir observes the most unsettling part of all this data being sold on her personal and intimate help is it back that it's impossible to know how it will ultimately be used. A huge problem with the data training business it's just how Kafka asking is you don't know who knows what about you or how is influencing what you see or how you're treated, I can't know the ultimate fate of the data I share with them, such is the murky nature of privacy in a world where seemingly endless network of companies you've never heard of are collecting information about you and trying to monetize it.
[54:14] I want to point out David I feel like there's a number of people. You could hear this and say well this is why you don't give companies information that you don't want them to share. I supposed to feel like this you know this is more likely to come from the men in the crowd on this particular subject of like how you didn't want companies to know when you were having your. Why did you share that. But that's a gross simplification of this problem where again the message that is fed to us is it's always on the individual. Why did you share that information with a company that's your fault.
[54:48] We have to recognize the manipulation that is going on behind-the-scenes here that goes so much deeper than just the individual apps themselves. We have to appear back the veil even further to realize that we as individuals living in modern society have been atomized our society has broken down our communities are solidarity. And so when we as individuals are at our most vulnerable when we find ourselves in the transition of great change when we Face uncertainty something like a pregnancy so many of us genuinely want and need. Guidance but because our society has a Raticate it much of the community that we used to turn to or in the essence of women communities that have been turned to four generations for assistance with such an important part of life. What many people feel they have no choice but to turn to whatever is being offered on app stores online forums or any other similar place that might provide some guidance into what is going on. Kashmir Hill rights, it pains me to admit that the Acts were ultimately helpful and steering me through my first pregnancy proving that for me at least convenience Trump privacy but now that I know the ropes. I would spare any future fetuses the pregnancy panopticon the only privacy Invasion they'll be subject to In Utero will be the ultrasound.
[56:13] So this is a topic for its own show like you mentioned David we don't want to misrepresent this pregnancy issue I mean where two men sitting here you haven't experienced this but I think we did discuss at one point on the show how Women's Health in general used to be something that women themselves, took control of in their communities and how the Midwife used to be an important pillar of generational knowledge for women. That role was largely eradicated from society because of the mail Monopoly over scientific knowledge and the propaganda that only an educated expert locked behind pay walls of books and institutions add the ability to facilitate Women's Health. The consequences of this of course include the feeling of isolation that many pregnant women feel it may well extend into such disturbing trends of rising deaths among women while giving birth, it doesn't stop there black women in the US for instance die giving birth 302 400% more than white women, let me think about that for a second three to four times more. I wouldn't be surprised if the reason has anything to do with the fact that the books on women's health have largely been written by white men for the past few centuries but this isn't the focus of the show and we're getting off topic so let's leave that for another time.
[57:29] We've talked a lot so far about the specific private companies that are abusing and exploiting all of our personal Healthcare data and turning that into valuable monetizable information, but then competency with our data and the exploitation of that information of who we are does not end in the private sector in fact. Also most assuredly continues when anytime government touch that same important information.
[57:54] As our listeners from Australia have drawn our attention to Australia has been receiving a lot of flack for the implementation of my health record and effort to automatically enroll Australian citizens into having their medical information stored in an online digital database.
[58:10] Plum paper like many bees idea that sounds great having a centralized medical information database that all your doctor's no matter what type of specialist there are or where you move to can have it information is something that has a lot of value.
[58:24] I have my doubts David.
[58:26] Will bear with me on this one positive benefit a side leading up to the implementation there have been multiple complaints that privacy would be violated the system was not secure that teenagers would lose their medical privacy and then in November of 2018 just a couple of weeks before this system was supposed to go live Australian digital Health agencies director of privacy resigned amid the accusation that the health Minister and the my health record agency Warrior ignoring the advice of privacy experts, well a couple weeks later the broken did gold automatically uploaded the health records of 17 million Australians and then just six weeks later. The database have been breached and several people have their health records Bude illegally.
[59:08] Exactly. This is why I think we talked about how valuable medical information is to companies so they can sell it and so they can direct our behavior and I feel like these pushes for digitization really just follow this model of how can we get everyone's information into a place where it's that much easier to pry it's that much easier to chop it up organize that sell it whatever and in that process all these systems are created that open the door or hackers and for nefarious people to get into that data in 2015 for example hackers figured out how to infiltrate hospital records through their weakest links it turns out that hospitals have a ton of medical devices and equipment like x-ray machines MRI machine and much more that are easy to get into and that's what these hackers did they install malware to come hospitals for patient medical records another example on July 14th 2018 Packers gained access to the network of the largest American Diagnostics company LabCorp you might know this company if you've ever had to perform a drug test as part of a job interview, I've done it well hackers got into this network and the attack is estimated to have exposed millions of people's Records who have gotten blood test urine test all kinds of test from LabCorp.
[1:00:27] And so I mean I know you're trying to say David that there's a lot of benefits from having to touch a databases but I'm not convinced that the security risk don't outweigh the potential benefit.
[1:00:38] What did you can have your cake and eat it too here Daniel.
[1:00:42] I'm sitting at a table outside of a black coffee mug and I I have a sign that says change my mind.
[1:00:48] Okay well there is absolutely undeniable value in having a your health records follow you around and information is very important as we talked about in this episode everyone wants to get their hands on it for good reason but it should be most important to each of us, because that health record is something that can quite literally Save Our Lives and making sure that our doctors and Healthcare professionals and caretakers have access to the information is important in making sure that we maintain our help and when we meet serious intervention they're able to do so appropriately and accurately, and I keep a single place that all this information can be accessed is hugely valuable, and this is what motivated this Australian my health record system is something that's Noble of course be a very incompetently, unsurprisingly put it into practice and it was June to fill your because there is no such thing as a secure centralized system unfortunately we're all looking for that Golden Goose. But really when you think about it then the benefits your Daniel are very obvious in the United States where we don't have a centralized systems if you go to a doctor out of state, we have to call up your old doctor to try and get them to fax paperwork near I was trying to go to the doctors the other day, I had to tell the the receptionist to call up another doctor to try and get a form faxed over and then they had to go around all these things. Time away from the health care process to make some more complicated there's more work on all that really shouldn't be done because this should be able to be look. It's really all this information should just type it in there it is ready to go.
[1:02:14] Okay so that's that's a problem I had to get around that how do you create a central system that is still secure that you can protect.
[1:02:22] We're all already individually carrying around a lot of information about us when you're going to the doctor you're often times if you have insurance bringing with you that insurance information but what if instead of just an insurance card we also had some sort of information card or driver from driving whatever-it-is we bringing we had to a doctor say here is my file add your stuff to it it plugs in their system they had everything access to it they can see what my last doctor saw insert it all and then that's it you know like they have access to it now it's updated I take it back with me when I go home and then move out of my way and only the information that they need is copied over I control this things I have passcodes on the parts I don't want to see and I don't even nitty-gritty details but this is very possible to have a system that is similar to what we're seeing here done in a centralized wave Australia but decent realizing that we as individuals retain control over our Healthcare information that's really the Crux of what we're trying to get across to you because like I said this information is important and valuable to each in a bus more so than to any other Advertiser or Healthcare Company whatever it is most viable to us personally and we shouldn't have to give. This Bible information just because someone else is trying to abused it if we can get control of it and retain our privacy control giving it away only when we need to now we're onto something and that's really what we need to be moving towards with 50 systems. Not handing over control of this value but maintaining it personal.
[1:03:46] Well I'll admit that's super interesting and I think it makes perfect sense if it's technically feasible. Put individual health information into the control of the individual themselves I think I've just been conditioned to think that if I want to access my health information I need to call a doctor visit a hospital today I mean I don't even know exactly how to do that.
[1:04:09] It's a lot of work you have to call dozens of doctors get them to send information to the last you what why do you want to see it you say I just want to see it and they'll ask Bill to fight you at it but eventually they have to give it over to you so you can do it.
[1:04:21] I'm not such a crazy idea it's the information that is literally who you are why would that be in anyone's hands but you.
[1:04:28] Well maybe mashing up some of these horrible privacy invasions with this centralized information Daniel will all have RFID chips inserted in our necks at some points with our full Medical Healthcare record right there available to whoever comes by.
[1:04:42] Well the swedes are already beating us to that David.
[1:04:45] Maybe that's what the future looks like that.
[1:04:47] Alright David so what can we do.
[1:06:00] I need to do exist you they usually cost more than harder to find and it's because the Mark has decided we would rather sacrifice our privacy for convenience or saving a few dollars in the process. What if we continue to support these people who are operating outside of this standard data is dollars Marketplace. Then we might start seeing a ship to that sort of idea of handling our information this is something Apple has been trying to do with their phones first away Google exploit every single possible information over Android devices not to say that apple is going to be using data but they're doing a much more limited scale in the companies like Google or Facebook are. Being informed of all this is hugely diable he's only as inform consumers can we understand what is really happening every time we saw that app or put on that.
[1:06:46] Call David I don't have anything to add to that but I do want to leave the listeners with just a couple things to think about and that's the fact that all the surveillance that we've talked about this medical surveillance and data harvesting. These efforts are often pitched to us as a minor inconvenience that we simply have to endure for a more secure world. It's this trade-off between privacy and security but it's a false security.
[1:07:16] Bruce schneier writing his book data and Goliath quotes. Security and surveillance are conflicting design requirements a system built for security is harder to surveil conversely a system built for easy surveillance is harder to secure. A built-in surveillance capability any system is insecure because we don't know how to build a system that only permits surveillance by the right sort of people. We need to recognize that to society as a whole security is more critical than surveillance. That is we need to choose a secure information infrastructure that inhibits surveillance instead of an insecure infrastructure that allows for easy surveillance. By prioritizing security we would be protecting the world information flows including our own from eavesdropping as well as more damaging attacks like theft and destruction. We would protect our information flows from governments non-state actors and criminals we would be making the world safer overall ins quote. And so that's just a concept to think about that we don't have to trade off privacy and Security in fact. When we give away privacy we're also inadvertently increasing our insecurities so it's a lose-lose situation.
[1:08:40] And one of the thing because this is health-related and we have talked about insurance companies before but ultimately. Insurance companies can only profit off of all this data and information on us because they exist in a for-profit competitive marketplace where that's how you get a competitive advantage. There are representatives in the United States that are starting to wake up to the fact of what you said David earlier about how many Americans truly want.
[1:09:12] A streamlined single-payer medicare-for-all system in this country and there are so many benefits that would be derived from that and one of them is. Incentivizing all this health medical data that is being collected on us and used to manipulate us. If we can Dee and sensitive eyes that from an economic standpoint Well we'd be making our own medical information a little bit more secure. In addition to all the pricing benefits and the fact that like you said our employers couldn't hold that insurance premium over our heads to keep us at our jobs. We should all really be holding our politicians accountable to supporting a true single-payer medicare-for-all Universal Health Care coverage. And not one of these proposals that are often attempts at compromise that, ostensibly would provide Universal coverage but somehow still allows these for-profit insurance companies to exist a true system that covers all of us a true single-payer system, preclude the very existence of any for-profit health insurance and that's the future we truly need but that's a lot to think about.
[1:10:22] As always Daniel but think about it we hope you will you can read more about all the topics see all the sources that we use as well as read a full transcript of this episode on our website at ashes ashes. O r g.
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