WEBVTT - Gift Cards for Your DNA Data 0:00:00.920 --> 0:00:04.000 Selecting and selling your data. Data is the new natural 0:00:04.040 --> 0:00:07.640 resource of our time. That's the most sought after information 0:00:08.119 --> 0:00:10.760 on the black market now was more and more patient 0:00:10.760 --> 0:00:13.920 information is shared on the internet. The lists are being sold. 0:00:14.040 --> 0:00:16.479 We don't know who is buying them. It's not just 0:00:16.600 --> 0:00:21.600 Facebook's Google, it's Amazon. It's also insurance companies, retail companies. 0:00:27.200 --> 0:00:29.520 Believe it or not, when you go to the doctor, 0:00:30.000 --> 0:00:32.839 the data from that doctor's visit is often sold to 0:00:32.880 --> 0:00:36.000 companies that have nothing to do with treating any illness. 0:00:37.400 --> 0:00:43.040 Electronic records companies, labs, pharmacies, insurers. They're all selling intimate 0:00:43.120 --> 0:00:47.760 data about you. It's not only big data, but big business. 0:00:48.960 --> 0:00:52.920 Welcome to Prognosis, bloom Brigs podcast about the intersection of 0:00:52.960 --> 0:00:56.760 health and technology and the unexpected places it's taking us. 0:00:57.400 --> 0:01:04.120 I'm your host, Michelle fay Cortes. This week, we're looking 0:01:04.160 --> 0:01:07.640 at a new kind of healthcare data broker. These companies 0:01:07.720 --> 0:01:10.800 don't just want to sell your data. They're also willing 0:01:10.800 --> 0:01:13.440 to pay you for it. But that's not really the point. 0:01:13.959 --> 0:01:16.360 Stay with us and we'll tell you what these companies 0:01:16.400 --> 0:01:20.640 are really after. Here's Bloomberg's health reporter Kristen B. Brown 0:01:20.880 --> 0:01:29.040 with the story. Okay, So I'm going to log into 0:01:29.080 --> 0:01:33.880 my Nebula account and see more opportunities there are for 0:01:34.080 --> 0:01:39.720 me to make some money off my DNA. That's the 0:01:39.760 --> 0:01:42.520 sound of me hunched over my laptop on a rainy 0:01:42.560 --> 0:01:46.880 Oakland afternoon, signing up to give my personal healthcare data away, 0:01:47.480 --> 0:01:50.720 or rather I'm signing up to sell it. Okay. So 0:01:50.800 --> 0:01:55.400 I'm going to take some surveys. Okay, So they want 0:01:55.400 --> 0:02:03.440 to know approximately how often do you drink alcohol? M daily? 0:02:03.480 --> 0:02:06.640 Are almost daily? Once twice a week, probably three or 0:02:06.640 --> 0:02:10.840 four times for a week. Uh, how many glasses of 0:02:11.080 --> 0:02:23.720 red wine do you drink? True white wine? I'm answering 0:02:23.760 --> 0:02:26.440 surveys about my health on the website of a company 0:02:26.520 --> 0:02:30.840 named Nebula Genomics. Nebula is one among a new breed 0:02:30.880 --> 0:02:35.079 of health data brokers. Like more traditional health data brokers, 0:02:35.240 --> 0:02:38.200 the company wants to profit off your data, in this 0:02:38.280 --> 0:02:42.440 case by selling it to researchers, but it wants you 0:02:42.639 --> 0:02:46.960 to profit off your data too. Nebula launched last fall 0:02:47.080 --> 0:02:49.720 with a lot of buzz. It was spun out of 0:02:49.720 --> 0:02:52.920 the lab of George Church, the Harvard geneticist as famous 0:02:52.919 --> 0:02:55.600 for his work as he is throwing wild ideas out there, 0:02:56.160 --> 0:03:00.480 like trying to resurrect the Wooly Mammoth Church, and many 0:03:00.520 --> 0:03:03.640 others in the scientific community believe that the more people 0:03:03.680 --> 0:03:06.920 share their genetic data, the sooner we will have treatments 0:03:06.960 --> 0:03:11.839 and cures for devastating diseases. This is oversimplifying it a bit, 0:03:12.040 --> 0:03:14.600 but the basic idea is that researchers could mine the 0:03:14.639 --> 0:03:17.799 genomes of people who share the same conditions and look 0:03:17.840 --> 0:03:21.720 for clues to treating those conditions, identifying the common bits 0:03:21.760 --> 0:03:24.280 of their genetic code that could be linked to disease. 0:03:25.240 --> 0:03:27.400 But if you want people to share their data, the 0:03:27.440 --> 0:03:30.080 company reasons, you have to give them something for it. 0:03:31.080 --> 0:03:34.320 This is a strategy long deployed among tech companies like 0:03:34.400 --> 0:03:38.080 Facebook and Google. You give Facebook all that data, and 0:03:38.160 --> 0:03:42.720 Facebook gives you access to Facebook. Nebula instead gives people 0:03:42.800 --> 0:03:48.000 access to freehold genome sequencing. Eventually, it also plans to 0:03:48.040 --> 0:03:51.360 offer other kinds of perks, like gift cards and money 0:03:51.400 --> 0:03:55.840 for sharing your data. I caught up with Kamalabad, the 0:03:55.880 --> 0:03:59.280 twenty four year old CEO of Nebula in San Francisco. 0:04:00.200 --> 0:04:03.000 Our goal is, you know, can we build this essentially 0:04:03.000 --> 0:04:06.920 a community of stakeholders that are willingly and transparently sharing 0:04:06.960 --> 0:04:09.880 their genomic data. You know, the main interest or main 0:04:09.880 --> 0:04:13.560 goal of nebulas to build data sets that enable scientists 0:04:13.560 --> 0:04:16.640 to do interesting things right, whether it's rational drug design, 0:04:16.720 --> 0:04:20.120 whether it's developing new use cases for precision medicine or 0:04:20.120 --> 0:04:24.119 pharmaca genomics. All this relies on large scale data sets 0:04:24.120 --> 0:04:26.400 that we don't really have access to today. In the 0:04:26.440 --> 0:04:29.839 genomics world, Companies like twenty three and Me have figured 0:04:29.839 --> 0:04:32.680 out that people will actually pay them to give away 0:04:32.720 --> 0:04:36.000 their health data. Consumers shell out as much as a 0:04:36.080 --> 0:04:39.320 hundred ninety nine bucks for twenty three and ME DNA test, 0:04:39.800 --> 0:04:41.919 and twenty three and Me can turn around and sell 0:04:41.960 --> 0:04:47.440 access to that information to pharmaceutical companies. Last year, and 0:04:47.480 --> 0:04:50.640 Me into three hundred million dollar deal with Glaxo Smith 0:04:50.680 --> 0:04:54.200 Klein to do just that. But Kamal says that's the 0:04:54.200 --> 0:04:57.599 wrong approach. We think a pretty big flaw on the 0:04:57.640 --> 0:05:00.599 existing model is that it's it's very transactional. Right. You 0:05:00.640 --> 0:05:02.840 kind of swipe your credit card, you get one of 0:05:02.880 --> 0:05:04.880 those spit kits, you spit in it, you send it back, 0:05:04.880 --> 0:05:06.520 you get your report, and you say, you know, great, 0:05:06.880 --> 0:05:09.320 that's it. Um what we want to incentivize people to 0:05:09.360 --> 0:05:12.960 do is come back over time, learn more about themselves, 0:05:13.080 --> 0:05:15.039 and share more information. That way, we can build a 0:05:15.080 --> 0:05:20.400 longitudinal view of somebody's health. Nebula wants to track your 0:05:20.400 --> 0:05:23.440 health over time to keep users coming back so that 0:05:23.520 --> 0:05:26.039 researchers can get a more complete picture of it a 0:05:26.080 --> 0:05:31.520 better data set. My own longitudinal health journey started with surveys, 0:05:32.320 --> 0:05:37.440 lots of surveys. I took a survey about cancer. Have 0:05:37.520 --> 0:05:41.600 I ever been diagnosed with cancer? No? And what about 0:05:41.640 --> 0:05:44.599 my diet? How many tables means have cooked vegetables do 0:05:44.640 --> 0:05:49.320 I eat first today? Table spoons? And my exercise habits? 0:05:49.960 --> 0:05:52.640 How many days you walk for at least ten minutes 0:05:53.400 --> 0:05:56.240 in a simple whole week. I like every day I 0:05:56.320 --> 0:06:00.240 walked from the bar ten minutes. I gave no feel 0:06:00.240 --> 0:06:04.040 information about my drinking habits and my medical history. I 0:06:04.120 --> 0:06:07.400 also uploaded my twenty train MEE data, which gives the 0:06:07.400 --> 0:06:11.720 company access to really intimate information about me, like whether 0:06:11.760 --> 0:06:16.040 I'm at risk for Alzheimer's or diabetes. At the end 0:06:16.080 --> 0:06:18.320 of all this, I had earned six hundred and fifty 0:06:18.400 --> 0:06:21.320 credits of the one thousand credits you need to get 0:06:21.360 --> 0:06:25.719 a free low grade whole genome sequencing instead of going 0:06:25.760 --> 0:06:27.600 through all this. By the way, you can also just 0:06:27.680 --> 0:06:32.040 buy the sequencing from Nebula for a hundred bucks. Recently, 0:06:32.279 --> 0:06:35.400 the company also launched a subscription service, which gives you 0:06:35.440 --> 0:06:38.160 access to things like new research about your genome and 0:06:38.240 --> 0:06:42.480 priority to participate in research studies. Another pitch the company 0:06:42.560 --> 0:06:45.480 makes is that if a researcher finds your information interesting, 0:06:46.520 --> 0:06:49.679 they might pay for a clinical grade sequencing and share 0:06:49.720 --> 0:06:53.280 that data with you. Comal told me that eventually there 0:06:53.279 --> 0:06:56.160 will also be opportunities to improve your own health by 0:06:56.200 --> 0:07:00.040 participating in research studies that, for example, give part have 0:07:00.120 --> 0:07:03.640 spens wearables to track things like heart rate. But as 0:07:03.640 --> 0:07:05.800 I was filling out all those surveys, I got the 0:07:05.839 --> 0:07:09.720 distinct feeling that I probably wasn't all that interesting to researchers. 0:07:10.880 --> 0:07:13.520 I exercise, I eat pretty well most of the time, 0:07:14.080 --> 0:07:17.480 and my family has no history of inherited disease other 0:07:17.520 --> 0:07:22.120 than really bad eyesight and pretty average health wise. Usually 0:07:22.360 --> 0:07:26.040 people's data is only valuable and aggregate when combined with 0:07:26.120 --> 0:07:31.240 data from millions of other people. Health data brokers are 0:07:31.280 --> 0:07:34.840 nothing new. They've actually been around since the nineteen fifties, 0:07:35.000 --> 0:07:38.880 but computers and then the Internet turned health data brokerage 0:07:38.880 --> 0:07:43.400 into a multibillion dollar business. Here's how it works. Companies 0:07:43.440 --> 0:07:46.920 collect de identified data from millions and millions of people, 0:07:47.360 --> 0:07:51.920 often paying pennies per record your blood test results, hospital records, 0:07:51.960 --> 0:07:55.080 prescription information. It all gets stripped of your name and 0:07:55.160 --> 0:07:59.280 sold by data broker middleman like a c A pharmaceutical 0:07:59.320 --> 0:08:02.080 company can buy access to your records to better sell 0:08:02.120 --> 0:08:05.160 you drugs, even as it might be difficult for you 0:08:05.280 --> 0:08:07.640 to get a copy of your own health care records 0:08:07.680 --> 0:08:10.520 from your doctor. And the practice, by the way, is 0:08:10.600 --> 0:08:13.600 totally legal under hip hop, the law that's been on 0:08:13.640 --> 0:08:18.600 the book since nine to protect patient privacy. I talked 0:08:18.600 --> 0:08:21.480 to Adam Tanner, who wrote a book about this. He 0:08:21.520 --> 0:08:23.600 was on a cruise ship off the coats of Vietnam 0:08:23.640 --> 0:08:26.280 when we talked. You go to the doctor's office, You 0:08:26.320 --> 0:08:29.640 close the door. You expect only the doctor will know 0:08:29.680 --> 0:08:32.680 what I'm telling about my health condition. But the doctor 0:08:32.720 --> 0:08:36.440 is often recording onto a computer the details of the 0:08:37.160 --> 0:08:40.360 of the patient's condition, and that's good to keep records 0:08:40.400 --> 0:08:43.360 on what patients are about. Many of those systems, however, 0:08:43.360 --> 0:08:47.000 those computer systems that connect doctors with hospitals and pharmacies 0:08:47.040 --> 0:08:50.800 and so on. Many of them sell anonymized data about patients, 0:08:51.000 --> 0:08:52.920 so it doesn't have your name in it, but it says, 0:08:53.240 --> 0:08:56.160 here is a woman this age, living in this part 0:08:56.200 --> 0:08:59.520 of town, and it joins records about you then with 0:08:59.600 --> 0:09:02.600 other previous records about you. Adam told me that this 0:09:02.640 --> 0:09:07.040 business really took off when records became digital. And digitization 0:09:07.080 --> 0:09:09.440 of medicine is a good thing in general because it 0:09:09.559 --> 0:09:12.760 keeps detailed records about you, but it has allowed this 0:09:13.000 --> 0:09:17.240 side business to establish itself in the shadows that most 0:09:17.280 --> 0:09:20.760 patients do not see, do not have a say in uh, 0:09:20.760 --> 0:09:23.760 and indeed many health professionals don't know about this. Data 0:09:23.880 --> 0:09:26.440 mostly gets used for marketing, and some of it can 0:09:26.480 --> 0:09:30.040 be pretty intimate or embarrassing, even though it's stripped of 0:09:30.040 --> 0:09:34.400 your name. These medical data dossiers usually include gender, age, 0:09:34.480 --> 0:09:37.800 and partial zip codes. Studies have shown that it's not 0:09:37.920 --> 0:09:41.160 always that hard to identify people based on it. One 0:09:41.200 --> 0:09:44.640 should be concerned because health information is often our most 0:09:44.720 --> 0:09:48.080 intimate information. You could be discriminated against the work, You 0:09:48.080 --> 0:09:51.839 could be discriminated against socially. Once this kind of information 0:09:51.920 --> 0:09:55.160 is out there in the ether, you can't put it back. Forever, 0:09:55.360 --> 0:09:59.280 and just knowing this basic information could be damaging to you, 0:10:00.160 --> 0:10:03.320 and it could be something relatively trivial. Adam makes a 0:10:03.480 --> 0:10:06.600 good point here in his book, he talks about how 0:10:06.679 --> 0:10:09.880 the actor Charlie Sheen wound up paying millions in bribes 0:10:09.920 --> 0:10:13.640 to keep his own HIV diagnosis private. For those of 0:10:13.720 --> 0:10:17.640 us that aren't famous, there is risk to life insurers, 0:10:17.679 --> 0:10:21.280 for example, if they access this data, would legally be 0:10:21.360 --> 0:10:25.080 allowed to discriminate against you based on it. But Adam 0:10:25.120 --> 0:10:28.040 told me he could also imagine some less obvious ways 0:10:28.120 --> 0:10:31.400 this data could be incriminating. I remember attending just a 0:10:31.400 --> 0:10:35.280 few years ago a lecture at the university and the 0:10:35.320 --> 0:10:40.240 woman was showing some videos on the internet, uh to 0:10:40.360 --> 0:10:42.640 demonstrate a point in her lecture, and off to the 0:10:42.720 --> 0:10:45.959 side of a YouTube video she was showing there was advertisement, 0:10:46.120 --> 0:10:49.240 are you depressed? We have the answer to your mental 0:10:49.280 --> 0:10:52.640 health issues. Um. Now, it could be a coincidence that 0:10:52.679 --> 0:10:55.760 those ads were served, but I can't erase from my 0:10:55.800 --> 0:10:57.959 mind the image that this is a person that may 0:10:58.000 --> 0:11:00.600 have had that issue. At a time when Facebook and 0:11:00.679 --> 0:11:04.040 Amazon and Google have woken people up to the value 0:11:04.040 --> 0:11:07.000 of their data, this new crop of companies that want 0:11:07.040 --> 0:11:10.120 to pay you for your data, are exploiting frustration with 0:11:10.240 --> 0:11:14.840 this model. Here's comal again the way the process exists today, 0:11:15.600 --> 0:11:18.600 no one is really winning except for these these intermediary 0:11:18.720 --> 0:11:22.800 data brokers. So I think this idea of let's let's 0:11:23.120 --> 0:11:27.040 empower patients to aggregate, curate, and share their their health 0:11:27.120 --> 0:11:33.720 data is something that's becoming more common and more mainstream. 0:11:33.800 --> 0:11:36.280 This is language you hear a lot in this world. 0:11:36.960 --> 0:11:40.520 The websites for these companies are filled with trust inspiring 0:11:40.520 --> 0:11:46.199 words like transparency and privacy. They promised control and ownership 0:11:46.320 --> 0:11:50.079 over your data. They also suggest that your data will 0:11:50.120 --> 0:11:52.960 be put to better use. The data bought and sold 0:11:53.000 --> 0:11:56.920 by traditional healthcare data brokers is often riddled with errors 0:11:57.120 --> 0:12:00.240 and without some serious looting, The people using I have 0:12:00.440 --> 0:12:02.680 no way of following up with the people the data 0:12:02.760 --> 0:12:05.199 come from if they want to ask follow up questions. 0:12:06.040 --> 0:12:09.520 It also hasn't really delivered the scientific or medical benefits 0:12:09.559 --> 0:12:13.000 that it could. Like I mentioned earlier, it mainly gets 0:12:13.080 --> 0:12:16.800 used for commercial purposes. But I wondered if giving your 0:12:16.880 --> 0:12:22.080 data away can ever really be an empowering move. Another 0:12:22.160 --> 0:12:25.839 company I gave my data to Luna DNA actually got 0:12:25.880 --> 0:12:29.240 permission from the Securities and Exchange Commission to give users 0:12:29.400 --> 0:12:33.920 shares of the company in exchange for data. Luna's pitch 0:12:34.040 --> 0:12:37.160 made me think of Facebook again and how surprised Facebook 0:12:37.240 --> 0:12:39.920 users were when they realized exactly how their data was 0:12:39.960 --> 0:12:43.160 being used, how they were paying for using the site. 0:12:44.040 --> 0:12:46.880 Luna CEO Bob Kane told me that giving people an 0:12:46.880 --> 0:12:50.960 ownership stake helps them trust that their data isn't being misused. 0:12:51.559 --> 0:12:54.200 Our data is very much ours. It's as unique as 0:12:54.240 --> 0:12:57.199 anything can get to defining us, and so it's one 0:12:57.200 --> 0:12:59.400 of those rights that nobody can take away from us. 0:13:00.040 --> 0:13:03.040 Una has set up a complicated corporate structure in order 0:13:03.080 --> 0:13:06.240 to make this happen. The database itself is actually a 0:13:06.280 --> 0:13:09.840 subsidiary of Luna, and that is what people get shares of. 0:13:10.760 --> 0:13:13.600 Since soft launching earlier this year, the company has been 0:13:13.640 --> 0:13:17.760 busy building partnerships with groups like Rare Disease Foundations, hoping 0:13:17.760 --> 0:13:21.760 patients with those diseases will contribute data and eventually lead 0:13:21.760 --> 0:13:25.920 to treatments. And when the database turns a profit by say, 0:13:26.040 --> 0:13:30.080 selling information to researchers, everyone gets a cut. Yes, so 0:13:30.120 --> 0:13:33.440 those shares are yours. They're non transferable because we don't 0:13:33.440 --> 0:13:36.160 think you can transfer the right to control your data, 0:13:36.240 --> 0:13:39.920 and they really represent your data in this system, and 0:13:39.960 --> 0:13:42.280 you're consenting for your data to be used at a 0:13:42.400 --> 0:13:47.000 population level to help researchers answer sort of higher level 0:13:47.080 --> 0:13:50.080 questions about links between your genome and your health or 0:13:50.080 --> 0:13:53.800 social determinants of health. How they're used is when we 0:13:53.920 --> 0:13:57.479 sign up with a commercial company, for instance of pharma, 0:13:57.640 --> 0:14:01.440 and they pay us to access to database. The proceeds 0:14:01.480 --> 0:14:04.839 will be shared with the community based on your ownership. 0:14:05.480 --> 0:14:08.480 I signed up for a Luna DNA account. I answered 0:14:08.480 --> 0:14:10.920 a few surveys about my health and shared my twenty 0:14:10.960 --> 0:14:14.959 three and me data. For that, I got fifty four shares. 0:14:15.640 --> 0:14:18.960 According to Luna's filing with SEC. Each of those shares 0:14:19.000 --> 0:14:23.200 are currently worth about seven cents. Based on those numbers, 0:14:23.320 --> 0:14:29.640 your whole genome would be worth one dollars. There are 0:14:29.680 --> 0:14:33.880 constantly new companies like Luna and Nebula popping up, and 0:14:33.920 --> 0:14:37.040 I shared my data with a bunch of them. I 0:14:37.120 --> 0:14:39.640 really wanted to get a sense of the entire landscape, 0:14:40.120 --> 0:14:42.080 to see what you can get when you give your 0:14:42.080 --> 0:14:47.240 own data away. Doc do AI gives people Amazon gift 0:14:47.240 --> 0:14:51.400 cards for sharing data and participating in trials. I didn't 0:14:51.400 --> 0:14:54.200 get anything for uploading my genome, and one of the 0:14:54.240 --> 0:14:57.160 trials I enrolled in a waitlist for would only earn 0:14:57.240 --> 0:15:00.200 me thirty of the one thousand points I would need 0:15:00.240 --> 0:15:04.160 to get a ten dollar Amazon gift card. Another company, 0:15:04.160 --> 0:15:07.640 in Blima, charges people to securely store their records on 0:15:07.680 --> 0:15:11.240 the blockchain, but you can also earn cryptocurrency for sharing 0:15:11.240 --> 0:15:16.040 your data. Yet another, Humanity dot co, pitches itself as 0:15:16.080 --> 0:15:19.440 a go between brokering data for its users and helping 0:15:19.480 --> 0:15:23.600 them get it cut. On the company's app and YouTube channel, 0:15:23.800 --> 0:15:27.280 there were all these testimonials from people proclaiming that ownership 0:15:27.320 --> 0:15:30.560 of data is a human right. I want to own. 0:15:30.640 --> 0:15:34.600 I want to own my data. I want to earn 0:15:34.640 --> 0:15:38.560 my data as my property because right now it is 0:15:38.640 --> 0:15:42.640 quite unclear. But Humanity, like the other companies, is also 0:15:42.720 --> 0:15:45.840 pretty early stage. There wasn't much I could do besides 0:15:45.880 --> 0:15:49.840 pledge my enthusiasm for the idea. My little data brokering 0:15:49.880 --> 0:15:52.440 experiment was starting to feel less like a mission of 0:15:52.440 --> 0:15:57.240 self empowerment and more like a waste of time. I 0:15:57.280 --> 0:16:00.680 talked with George Contreris, a law professor at the University 0:16:00.680 --> 0:16:03.640 of Utah who thinks a lot about these things. He 0:16:03.800 --> 0:16:07.560 was also skeptical. I mean the cynical view is that 0:16:07.640 --> 0:16:12.840 these companies are cropping up so that they can monetize 0:16:12.880 --> 0:16:15.440 the data, right, I mean, not not so that patients 0:16:15.560 --> 0:16:19.640 can profit from the use of their health data, so 0:16:19.720 --> 0:16:23.040 that these companies can become intermediaries and take a slice 0:16:23.760 --> 0:16:27.480 of every data transaction that comes along. All of the 0:16:27.520 --> 0:16:30.280 companies I talked to told me that people really shouldn't 0:16:30.320 --> 0:16:33.520 be in it for the rewards anyway. It's about helping 0:16:33.520 --> 0:16:36.960 the progress of science and medicine, and they want to 0:16:36.960 --> 0:16:40.200 do it more transparently and in doing so also collect 0:16:40.280 --> 0:16:44.240 higher quality data. But it's not the collecting health data 0:16:44.440 --> 0:16:49.200 doesn't have legitimate justifications. George said, there's a doctor's office 0:16:49.200 --> 0:16:54.120 and twenty people show up with the same strange flu symptoms. 0:16:54.280 --> 0:16:57.280 We we want that doctor's office to report that to 0:16:57.320 --> 0:17:00.560 the c DC, and we want them to figure out 0:17:00.560 --> 0:17:03.600 what's going on and then to develop a vaccine. There 0:17:03.640 --> 0:17:08.400 are a million contexts where it's important for health care 0:17:08.400 --> 0:17:12.199 providers to be able to provide data. His issue was 0:17:12.240 --> 0:17:15.119 more that this new breed of data brokers could actually 0:17:15.119 --> 0:17:18.680 wind up making things more complicated by starting to treat 0:17:18.760 --> 0:17:22.600 data like legal property. If your data is legal property. 0:17:22.880 --> 0:17:24.880 All of a sudden, there are all these new issues, 0:17:25.000 --> 0:17:28.560 like asking permission every time someone wants to use it 0:17:29.160 --> 0:17:32.560 and figuring out things like who controls your data when 0:17:32.560 --> 0:17:35.800 you die. If you are in a situation where the 0:17:35.880 --> 0:17:40.640 centers for disease control, or hospitals or pharmaceutical companies vaccine 0:17:40.680 --> 0:17:44.960 companies needed to figure out how to pay somebody every 0:17:45.000 --> 0:17:48.040 time they wanted to use some data, you know the system. 0:17:48.240 --> 0:17:52.040 The system would a become much less efficient and fee 0:17:52.040 --> 0:17:54.920 would be come much more expensive. Both of those are 0:17:54.920 --> 0:17:59.160 not good for public health, George said. Ironically, in this 0:17:59.200 --> 0:18:02.200 new model, people might wind up giving away even more 0:18:02.320 --> 0:18:07.040 information and having fewer protections for it. They're better protected 0:18:07.160 --> 0:18:10.520 under the current system with HIPPA than they are with 0:18:10.720 --> 0:18:15.520 these data brokers, who you know, are pretty uncontrolled, unregulated, 0:18:15.720 --> 0:18:20.040 and you know you you basically just have to trust them, 0:18:20.080 --> 0:18:24.280 although they're you know, they're really just profit oriented startups 0:18:24.320 --> 0:18:28.359 at this point. Um so I would honestly rather trust 0:18:28.359 --> 0:18:31.760 my hospital than than one of these data brokers to 0:18:32.520 --> 0:18:35.640 use my data properly. I talked with a few other 0:18:35.720 --> 0:18:39.679 experts in the space though that disagreed with George. Adam, 0:18:39.920 --> 0:18:42.280 the guy who wrote the Health Data Book, and Eric Topol, 0:18:42.440 --> 0:18:45.439 a geneticist who has written a lot about patient access 0:18:45.480 --> 0:18:49.520 to data, both told me they were actually optimistic, so 0:18:49.560 --> 0:18:53.000 long as these companies are transparent and give people choices 0:18:53.119 --> 0:18:56.600 and how their data is used, the point of collecting 0:18:56.640 --> 0:19:00.000 all this data, after all, to help advance science and medicine, 0:19:00.000 --> 0:19:04.120 and to find cures for devastating diseases and understand more 0:19:04.200 --> 0:19:07.520 about how the human body works. It's hard to argue 0:19:07.560 --> 0:19:12.040 with that. But in reporting this story, I couldn't help 0:19:12.080 --> 0:19:15.920 think about another story, the now famous story of Henrietta Lacks. 0:19:16.880 --> 0:19:19.479 Henriette A. Lacks was a black woman who died of 0:19:19.520 --> 0:19:22.439 cancer in the South in the nineteen fifties after getting 0:19:22.480 --> 0:19:26.720 pretty lacking medical treatment, But doctors harvested her cells, which 0:19:26.760 --> 0:19:30.280 turned out to have some special characteristics. They didn't die. 0:19:31.440 --> 0:19:34.919 The HeLa cells proved invaluable to medical research, and with 0:19:34.960 --> 0:19:38.640 their help, many companies got rich. Well. Henrietta's family, at 0:19:38.640 --> 0:19:42.000 times barely got by. What if the genome you were 0:19:42.000 --> 0:19:45.120 paid twenty one for winds up leading to a billion 0:19:45.160 --> 0:19:49.199 dollar cure. Most of us have pretty average datum, but 0:19:49.280 --> 0:19:52.000 some of us don't. It was one thirty two year 0:19:52.040 --> 0:19:55.880 old aerobics instructor in the Dallas suburbs that led researchers 0:19:55.920 --> 0:19:58.680 to a mutation in the gene pc s K nine 0:19:59.119 --> 0:20:02.359 that seems to low or levels of bad cholesterol. It 0:20:02.480 --> 0:20:05.480 was a finding that led multiple companies to pursue therapies 0:20:05.720 --> 0:20:09.240 that could one day rake in billions. If our medical 0:20:09.320 --> 0:20:12.000 data does lead to a cure, should we get a cut. 0:20:19.520 --> 0:20:21.199 At the end of all this, I had given my 0:20:21.240 --> 0:20:24.920 health data away too many different companies, and in return, 0:20:25.080 --> 0:20:28.800 I'd gotten halfway to a free DNA sequencing and fifty 0:20:28.840 --> 0:20:33.200 four shares worth seven cents of hoop. These companies all 0:20:33.200 --> 0:20:36.119 make the argument that this was empowering, that I was 0:20:36.160 --> 0:20:40.360 taking control of my own information. I want to help 0:20:40.400 --> 0:20:44.240 advance medical research, but there was something disingenuous about the 0:20:44.280 --> 0:20:49.480 suggestion that sharing my information would be beneficial to me. Instead, 0:20:49.840 --> 0:20:52.719 it felt like I had just been complicit in harvesting 0:20:52.760 --> 0:20:56.840 my own information for other people to profit off. I 0:20:56.960 --> 0:21:16.679 definitely did not feel empowered. And that's it for this 0:21:16.680 --> 0:21:20.560 week's prognosis. Thanks for listening. Do you have a story 0:21:20.560 --> 0:21:23.679 about healthcare in the US or around the world We 0:21:23.720 --> 0:21:26.480 want to hear from you. Find me on Twitter at 0:21:26.520 --> 0:21:29.480 the Cortes. If you were a fan of this episode, 0:21:29.680 --> 0:21:32.119 please take a moment to rate and review us. It 0:21:32.200 --> 0:21:36.560 helps new listeners find the show. This episode was produced 0:21:36.560 --> 0:21:39.680 by Liz Smith. Our story editors were Drew Armstrong and 0:21:39.800 --> 0:21:44.120 Rick Shine. Frances Glivie is head of Bloomberg Podcasts. We'll 0:21:44.160 --> 0:21:47.440 be back on June six with our next episode. See 0:21:47.440 --> 0:21:47.720 you then,