Alphabetâs (Googleâs) life sciencesÂ division VerilyÂ has launched its publicÂ pitch for aÂ massive, multi-year health studyÂ itâs leading along with Duke University School of Medicine, Stanford Medicine and Google proper.
Verily is hoping to recruit someÂ 10,000 Americans toÂ volunteer to share their medical records and have blood and other bodily fluids extracted and linked to a Google account in order for the companyÂ and its partners to try to âspur the next generation of medical discoveries,â as it couches it. In exchange, participants will get some of their own health data shared back with themÂ (though itÂ cautions not to expect to get âmedical care or adviceâ), plus a small amount of financial compensation for time lost and a little earlyÂ intel on what the ad giantÂ might be learning from their sensitive health data.
The Project Baseline study has been a long time in the works â itÂ was previously slatedÂ to launch in 2015,Â but hasÂ evidently taken rather longer to set up; unsurprisingly so, given the scope and size of the longitudinal study. The four-yearÂ study 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 chestÂ X-rays and echocardiograms; and other tests, such as assessing physical strength and answering health-related questionnaires.
Some participants will also be asked to visit aÂ study site quarterly for one to two hours to âgather more frequent information about health profiles that we are especially interested in,â says Verily, andÂ some may also be asked in for appointments at other times âfollowing a significant life event, so that we can see if and how your health changes.â
All volunteers will be required to wear an âinvestigational wristwatchâ daily â aka the VerilyÂ study watch announced earlier this month; and sleep withÂ a sensor underneath their mattress (so you can add sex-tracking to this studyâs scope â a woman on the Project Baseline question phone line said sheâd been asked about the movement-tracking mattress coil âa lot!â); as well as haveÂ a dedicated Wi-Fi hub device installed in their home to suck up and send the tracking data from the devices back to Googleâs servers.
Thereâs alsoÂ trimonthly, 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 frequentlyÂ as daily, such as asking them about their sleep quality orÂ alcohol consumption. Presumably the project researchers want the ability toÂ be able toÂ react to specific tracked activity/events with follow-up questions that might shed light on linked factors.
Participants will be compensatedÂ $410 per annual site visit; $30 per visit for the shorter quarterly assessments; and $10 a time for the trimonthly questionnaires, according to a rep on the Project Baseline question phone line â so no one exceptÂ Verily and its various academicÂ and commercialÂ partners standsÂ to get rich from being involved in thisÂ lengthy medical research project.
Lastly, but by no means least, study participants will beÂ required to share access to their medical records with VerilyÂ â so anyone signing up for this studyÂ really will be standing naked in front ofÂ Mountain View.
On the website where the company is pitchingÂ for volunteers, VerilyâsÂ marketing is heavy on tryingÂ to stir up stirring historic parallelsÂ for thisÂ âmissionâ to â as it puts it â âbetter understand health and prevent disease,â laying it on thickly thatÂ participants will be âdoing goodâ and âhelping humanityâ by contributing their health data to the research effort.
To the brink, frankly,Â of emotional blackmail. A glossy marketing video showing a series of people smiling into the camera intones:Â âWhat if you could impact the health of millions of people, just by sharing your personal health story?â â with the unspoken implication being: how dare you be so selfish NOT to share your medical records with Google.
The website isÂ rather 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 thereâs also very little aboutÂ the underlying commercial motives driving the effort to gather health data in âincredible depth and detail,â as Verilyâs marketing paintsÂ it.
For example, an FAQ on the website ostensibly answering what the data will actually be used for is decidedly non-specific â 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.
Itâs 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 âdirectly identifying information (your name, street address, phone number and email),â but âexternal researchers and organizations for researchâ will also be given access to the data â albeit with the directly identifying info removed. Although, on that front, itâs worth pointing out that the re-identification of anonymous individuals attached toÂ healthÂ data has been demonstrated by researchers to be disturbingly easy. So the possibility that suchÂ granular medical data might beÂ reattached to study participantsâ identities in the hands of unknown third parties cannot be ruled out.
On its blog, Verily specifiesÂ that it will be working with âpartners from academia, medicine, science, patient-advocacy, engineering and design,â adding: âIn 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.â
And even if you were to create a new Google ID just to use for Project Baseline, itâs rather harder to change your real-worldÂ identity (i.e. your real name) and thus de-link all of the online information Google might have (or be able to glean) about youÂ based on that rather less mutable identifier. (Something it unintentionally flags up âÂ given itÂ canâtÂ resist linking Baselineâs aim with other Alphabet divisionsâ prior efforts; a slogan for the project claims: âWeâve mapped the world. Now letâs map human health.â)
Asked whether Google might share information it has on internet users who also are participating inÂ the study, the woman on the Project Baseline phoneÂ line wasnât sure. âI donât believe so,â she said, notingÂ thatÂ participants selected to be a part of the study âcan ask any questions that I canât answer at the site visit.â Furthermore, âYou can take your head out of the ring at any time,â she added. âYou can take your application or your enrollment and withdraw it at any time if anything doesnât sound good.â
They also told us that the health data would not be used by Google to target advertising or suggest commercial services in future. But the ad giant isÂ going to wantÂ to monetize the data somehow â soÂ how it might do so remains an open question.
It goes without saying that Verily, a division of Googleâs parent company Alphabet, is a for-profit enterprise so is obviouslyÂ looking for ways to profit from the health data that study participants will be handing it. Yet despite this rather lopsided exchange â your blood, your moods and your medical records in exchange for a vague notionÂ of some possible future health benefits (for someone) at an unknown cost â VerilyÂ isÂ not committing to hand over all the data it gathers duringÂ the study to individual study participants, saying only that it âmayâ return information such as laboratory tests and clinical assessments, and that: âWe think itâs important to return as much of your information as possible in an ethical, responsible manner and in a format that is interesting and understandable.â So, in other words, volunteers for this four-year âquestâÂ wonât be privyÂ toÂ all the data Alphabetâs divisions will be extracting from theirÂ person.
In a blog postÂ about Project Baseline, the company writes that it is focused on âcreating new tools to collect and organize information in ways previously not possible so that we can make the information usefulâ â describing the initiative overall as a âunified effort to map human health.â
â[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 â 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,â it adds.
Asked for what purposes Verily will shareÂ the anonymized data of study participants, theÂ company spokesperson said: âWe are planning to develop a discovery platform that the scientific community can leverage in the future for exploratory research. We intend to make the de-identified data available to qualified investigators around the world for research purposes.â
âParticipant data will be encrypted and stored at rest in replicated locations in data centers with strict access controls. Individuals administering the study will gain access to the data in a need-to-know basis, with permissions audited periodically. De-identified health data may also reside in the technical infrastructure of partners of the Baseline project, if they have successfully passed a vendor security audit by Verily. Physical and digital security precautions are set in place in either case,â they added.
Responding on what will happen to participantsâ data after the study has concluded, and how longÂ the data will be retained for, the spokesperson told us: âAfter the study is completed, participant data will be made available in de-identified form for research by qualified researchers. The de-identified data will remain as a resource to the company for a long-term period, hopefully spurring ongoing research and development.â
Alphabet/GoogleÂ has faced controversy in the U.K. where its AI division, DeepMind unveiledÂ a 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 publicÂ how many medical records were being shared with DeepMind to powerÂ an app for hosting an NHS algorithm designed toÂ spot the early signs of aÂ kidney condition. An FOI request subsequently revealedÂ DeepMind had beenÂ given access to some 1.6 million patientsâ health data â without their knowledge or consent. TheÂ information-sharing arrangementÂ remains under investigation by U.K. data protection watchdogs.
But whileÂ AlphabetÂ has been able to quickly suck up vast quantitiesÂ of medical dataÂ in the U.K. to power its ambitions for AI-enabled preventative healthcare because aÂ cash-strapped NHS isÂ all too eager to accept the offer of free help from a high-profile, high-tech outsider,Â the U.S. healthcare marketplace evidently requires a different approach to outsiderÂ corporates gaining access to medical records at scale. Letâs not forgetÂ Googleâs prior attempt at generating mass adoption forÂ an opt-in, centralized electronic medical records and health data platform of its own failed spectacularly. Seen from that angle, Project Baseline has rather more modestÂ ambitions to onlyÂ acquire the medical records of ~10,000 US citizens â albeit this studyÂ isÂ also couched asÂ only the start. âEventually we hope to expand internationally to capture health diversity on a global scale,â writes Verily.
This post was updated with additional comment from a Project Baseline press spokesperson
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