Form an orderly queue! Google wants your blood (and other bodily fluids). Oh and your medical records

By admin | Posted OnApril 22, 2017

Alphabets (Googles) life sciencesdivision Verilyhas launched its publicpitch for amassive, multi-year health studyits leading along with Duke University School of Medicine, Stanford Medicine and Google proper.

Verily is hoping to recruit some10,000 Americans tovolunteer to share their medical records and have blood and other bodily fluids extracted and linked to a Google account in order for the companyand its partners to try to spur the next generation of medical discoveries, as it couches it. In exchange, participants will get some of their own health data shared back with them(though itcautions not to expect to get medical care or advice), plus a small amount of financial compensation for time lost and a little earlyintel on what the ad giantmight be learning from their sensitive health data.

The Project Baseline study has been a long time in the works itwas previously slatedto launch in 2015,but hasevidently taken rather longer to set up; unsurprisingly so, given the scope and size of the longitudinal study. The four-yearstudy will involve volunteers making annual visits to one of the Baseline study sites for a full one to two days of health tests, including giving blood, saliva and other samples; doing specialized tests such as chestX-rays and echocardiograms; and other tests, such as assessing physical strength and answering health-related questionnaires.

Some participants will also be asked to visit astudy site quarterly for one to two hours to gather more frequent information about health profiles that we are especially interested in, says Verily, andsome may also be asked in for appointments at other times following a significant life event, so that we can see if and how your health changes.

All volunteers will be required to wear an investigational wristwatch daily aka the Verilystudy watch announced earlier this month; and sleep witha sensor underneath their mattress (so you can add sex-tracking to this studys scope a woman on the Project Baseline question phone line said shed been asked about the movement-tracking mattress coil a lot!); as well as havea dedicated Wi-Fi hub device installed in their home to suck up and send the tracking data from the devices back to Verilys servers.

Theres alsotrimonthly, half-hour-long online surveys to take, with questions about diet, exercise and well-being; and a mobile app that will push additional questions at participants, perhaps as frequentlyas daily, such as asking them about their sleep quality oralcohol consumption. Presumably the project researchers want the ability tobe able toreact to specific tracked activity/events with follow-up questions that might shed light on linked factors.

Participants will be compensated$410 per annual site visit; $30 per visit for the shorter quarterly assessments; and $10 a time for the trimonthly questionnaires so no one exceptVerily and its various academicand commercialpartners standsto get rich from being involved in thislengthy medical research project.

Lastly, but by no means least, study participants will berequired to share access to their medical records with Verily so anyone signing up for this studyreally will be standing naked in front ofMountain View.

On the website where the company is pitchingfor volunteers, Verilysmarketing is heavy on tryingto stir up stirring historic parallelsfor thismission to as it puts it better understand health and prevent disease, laying it on thickly thatparticipants will be doing good and helping humanity by contributing their health data to the research effort.

To the brink, frankly,of emotional blackmail. A glossy marketing video showing a series of people smiling into the camera intones:What if you could impact the health of millions of people, just by sharing your personal health story? with the unspoken implication being: how dare you be so selfish NOT to share your medical records with Google.

The website israther thinner on detail about what will actually be done with all the sensitive personally identifiable health data that will be obtained from study participants. And theres also very little aboutthe underlying commercial motives driving the effort to gather health data in incredible depth and detail, as Verilys marketing paintsit.

For example, an FAQ on the website ostensibly answering what the data will actually be used for is decidedly non-specific saying only:

We will use it to expand the Baseline database and develop advanced tools for collecting, organizing, and analyzing health information. As well, in partnership with qualified researchers and organizations, we will use the data to uncover new medical insights or develop new health products.

Its also not clear who else the data might be shared with and for what specific purposes. The FAQ notes that members of the Baseline team will have access to directly identifying information (your name, street address, phone number and email), but external researchers and organizations for research will also be given access to the data albeit with the directly identifying info removed. Although, on that front, its worth pointing out that the re-identification of anonymous individuals attached tohealthdata has been demonstrated by researchers to be disturbingly easy. So the possibility that suchgranular medical data might bereattached to study participants identities in the hands of unknown third parties cannot be ruled out.

On its blog, Verily specifiesthat it will be working with partners from academia, medicine, science, patient-advocacy, engineering and design, adding: In the future, the intent is to make de-identified data from the Project Baseline study available to qualified researchers to spur new ideas across the broad ecosystem.

The Project Baseline website also notes that study participants will be required to have a Google account so theyre effectively also agreeing to link a (potentially massive) trove of online activity with this highly granular personal health data. And its not clear at what point/s and/or which portions of their data arebeing covered by Googles privacy policy or by the Project Baseline privacy policy(or indeed the consent forms they will go on to sign at study sites). An unreassuring single line in the FAQ notes thatGoogle will not sell your information for advertising but the company is in the business of ad targeting, so does not need to sell users personal information to advertisers it sells ad targeting based on its data holdings.

And even if you were to create a new Google ID just to use for Project Baseline, its rather harder to change your real-worldidentity (i.e. your real name) and thus de-link all of the online information Google might have (or be able to glean) about youbased on that rather less mutable identifier. (Something it unintentionally flags up given itcantresist linking Baselines aim with other Alphabet divisions prior efforts; a slogan for the project claims: Weve mapped the world. Now lets map human health.)

Asked whether Google might share information it has on internet users who also are participating inthe study, the woman on the Project Baseline phoneline wasnt sure. I dont believe so, she said, notingthatparticipants selected to be a part of the study can ask any questions that I cant answer at the site visit. Furthermore, You can take your head out of the ring at any time, she added. You can take your application or your enrollment and withdraw it at any time if anything doesnt sound good.

It goes without saying that Verily, a division of Googles parent company Alphabet, is a for-profit enterprise so is obviouslylooking for ways to profit from the health data that study participants will be handing it. Yet despite this rather lopsided exchange your blood, your moods and your medical records in exchange for a vague notionof some possiblefuture health benefits (for someone) it isnot committing to hand over all the data it gathers duringthe study to individual study participants, saying only that it may return information such as laboratory tests and clinical assessments, and that: We think its important to return as much of your information as possible in an ethical, responsible manner and in a format that is interesting and understandable. So, in other words, volunteers for this four-year questwont be privytoall the data Alphabets divisions will be extracting from theirperson.

Weve reached out to Verily with various questions and will update this post with any response. In a blog postabout Project Baseline, the company writes that it is focused on creating new tools to collect and organize information in ways previously not possible so that we can make the information useful describing the initiative overall as a unified effort to map human health.

[T]he Project Baseline study dataset will include clinical, molecular, imaging, self-reported, behavioral, environmental, sensor and other health-related measurements. To organize this information, we are creating an infrastructure that can process multi-dimensional health data much of which have never been combined for an individual. Our vision is that this data platform can serve as a single query source and may be used for more seamless data integration and collaboration, it adds.

Alphabet/Googlehas faced controversy in the U.K. where its AI division, DeepMind unveileda big health push last year, partnering with a publicly funded National Health Service Trust to get access to patient health data in exchange for building an app. However, at the launch of the first partnership it was not made publichow many medical records were being shared with DeepMind to poweran app for hosting an NHS algorithm designed tospot the early signs of akidney condition. An FOI request subsequently revealedDeepMind had beengiven access to some 1.6 million patients health data without their knowledge or consent. Theinformation-sharing arrangementremains under investigation by U.K. data protection watchdogs.

But whileAlphabethas been able to quickly suck up vast quantitiesof medical datain the U.K. to power its ambitions for AI-enabled preventative healthcare because acash-strapped NHS isall too eager to accept the offer of free help from a high-profile, high-tech outsider,the U.S. healthcare marketplace evidently requires a different approach to outsidercorporates gaining access to medical records at scale. Lets not forgetGoogles prior attempt at generating mass adoption foran opt-in, centralized electronic medical records and health data platform of its own failed spectacularly. Seen from that angle, Project Baseline has rather more modestambitions to onlyacquire the medical records of ~10,000 US citizens albeit this project isalso couched asonly the start. Eventually we hope to expand internationally to capture health diversity on a global scale, writes Verily.

Read more: https://techcrunch.com/2017/04/21/form-an-orderly-queue-google-wants-your-blood-and-other-bodily-fluids-oh-and-your-medical-records/