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Alphabet\u2019s (Google\u2019s) life sciences\u00a0division Verily<\/a>\u00a0has launched its public\u00a0pitch<\/a> for a\u00a0massive, multi-year health study\u00a0it\u2019s leading along with Duke University School of Medicine, Stanford Medicine, and Google proper.<\/p>\n Verily is hoping to recruit some\u00a010,000 Americans to\u00a0volunteer to share their medical records and have blood and other bodily fluids extracted and linked to a Google account in order for the company\u00a0and its partners to try to \u201cspur the next generation of medical discoveries\u201d, as it couches it<\/a>. In exchange, participants will get some of their own health data shared back with them\u00a0(though it\u00a0cautions not to expect to get \u201cmedical care or advice\u201d), plus a small amount of financial compensation for time lost, and a little early\u00a0intel on what the ad giant\u00a0might be learning off of their sensitive health data.<\/p>\n The Project Baseline study has been a long time in the works \u2014 it\u00a0was previously slated\u00a0to launch in 2015<\/a>\u00a0but has\u00a0evidently taken rather longer to set up; unsurprisingly so, given the scope and size of the longitudinal study. The four-year\u00a0study<\/a> 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 chest\u00a0X-rays and echocardiogram; and other tests such as assessing physical strength and answering health-related questionnaires.<\/p>\n Some participants will also be asked to visit a\u00a0study site quarterly for one to two hours to \u201cgather more frequent information about health profiles that we are especially interested in\u201d, says Verily, and\u00a0some may also be asked in for appointments at other times \u201cfollowing a significant life event, so that we can see if and how your health changes\u201d.<\/p>\n All volunteers will be required to wear an \u201cinvestigational wristwatch\u201d daily \u2014 aka the Verily\u00a0study watch announced earlier this month<\/a>; and sleep with\u00a0a sensor underneath their mattress (so you can add sex-tracking to this study\u2019s scope \u2014 a woman on the Project Baseline question phone line said she\u2019d been asked about the movement tracking mattress coil \u201ca lot!\u201d); as well as have\u00a0a dedicated\u00a0wi-fi hub device installed in their home to suck up and send the tracking data from the devices back to Verily\u2019s servers.<\/p>\n There\u2019s also\u00a0trimonthly, 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 frequently\u00a0as daily, such as asking them about their sleep quality or\u00a0alcohol consumption. Presumably the project researchers want the ability to\u00a0be able to\u00a0react to specific tracked activity\/events with follow up questions that might shed light on linked factors.<\/p>\n Participants will be compensated\u00a0$410 per annual site visit; $30 per visit for the shorter quarterly assessments; and $10 a time for the trimonthly questionnaires. So no one except\u00a0Verily and its various academic\u00a0and commercial\u00a0partners stands\u00a0to get rich from being involved in this\u00a0lengthy medical research project.<\/p>\n Lastly, but by no means least, study participants will be\u00a0required to share access to their medical records with Verily\u00a0\u2014 so anyone signing up for this study\u00a0really will be standing naked in front of\u00a0Mountain View.<\/p>\n On the website where the company is pitching\u00a0for volunteers, Verily\u2019s\u00a0marketing is heavy on trying\u00a0to stir up stirring historic parallels\u00a0for this\u00a0\u201cmission\u201d to \u2014 as it puts it \u2014 \u201cbetter understand health and prevent disease\u201d, laying it on thickly that\u00a0participants will be \u2018doing good\u2019 and \u2018helping humanity\u2019 by contributing their health data to the research effort.<\/p>\n To the brink, frankly,\u00a0of emotional blackmail. A glossy marketing video showing a series of people smiling into the camera intones:\u00a0\u201cwhat if you could impact the health of millions of people, just by sharing your personal health story?\u201d \u2014 with the unspoken implication being: how dare you be so selfish NOT to share your medical records with Google.<\/p>\n The website is\u00a0rather thinner on detail about what will actually<\/em> be done with all the sensitive personally identifiable health data that will be obtained from study participants. And there\u2019s also very little about\u00a0the underlying commercial motives driving the effort to gather health data in \u201cincredible depth and detail\u201d, as Verily\u2019s marketing paints\u00a0it.<\/p>\n For example an FAQ on the website ostensibly answering what the data will actually be used for<\/em> is decidedly non-specific \u2014 saying only:<\/p>\n 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.<\/p>\n<\/blockquote>\n It\u2019s 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 \u201cdirectly identifying information (your name, street address, phone number, and email)\u201d, but \u201cexternal researchers and organizations for research\u201d will also be given access to the data \u2014 albeit with the directly identifying info removed. Although, on that front, it\u2019s worth pointing out that the re-identification of anonymous individuals\u00a0attached to\u00a0health\u00a0data has been demonstrated by researchers<\/a> to be disturbingly easy. So the possibility that such\u00a0granular medical data might be\u00a0reattached to study participants\u2019 identities in the hands of unknown third parties cannot be ruled out.<\/p>\n On its blog, Verily specifies\u00a0that it will be working with \u201cpartners from academia, medicine, science, patient-advocacy, engineering and design\u201d, adding: \u201cIn 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.\u201d<\/p>\n The Project Baseline website also notes that study participants will be required to have a Google account \u2014 so they\u2019re effectively also agreeing to link a (potentially massive) trove of online activity with this highly granular personal health data. And it\u2019s not clear at what point\/s and\/or which portions of their data are\u00a0being covered by Google\u2019s privacy policy or by the Project Baseline privacy policy<\/a>\u00a0(or indeed the consent forms they will go on to sign at study sites). An unreassuring single line in the FAQ<\/a> notes that\u00a0\u201cGoogle will not sell your information for advertising\u201d but the company is in the business of ad targeting, so does not need to sell users\u2019 personal information to advertisers \u2014 it sells ad targeting based on its data holdings.<\/p>\n Even if you were to create a new Google ID just to use for Project Baseline it\u2019s rather harder to change your real world\u00a0identity (i.e. your real name) and thus de-link all of the online information Google might have (or be able to) glean about you\u00a0based on that rather less mutable identifier. Something it unintentionally flags up \u2014\u00a0given it\u00a0can\u2019t\u00a0resist linking Baseline\u2019s aim\u00a0with\u00a0other Alphabet divisions\u2019 prior efforts; a slogan for the project claims: \u201cWe\u2019ve mapped the world. Now let\u2019s map human health.\u201d<\/p>\n Asked whether Google might share information it has on Internet users who are also participating in\u00a0the study, the woman on the Project Baseline phone\u00a0line wasn\u2019t sure. \u201cI don\u2019t believe so,\u201d she said, noting\u00a0that\u00a0participants selected to be a part of the study \u201ccan ask any questions that I can\u2019t answer at the site visit\u201d. You can take your head out of the ring at any time,\u201d she added. \u201cYou can take your application or your enrollment and withdraw it at any time if anything doesn\u2019t sound good.\u201d<\/p>\n It goes without saying that Verily, a division of Google\u2019s parent company Alphabet, is a for-profit enterprise so is obviously\u00a0looking for ways to profit from the health data that study participants will be handing it. Yet despite this rather lopsided exchange \u2014 your blood, your moods and your medical records in exchange for a vague notion\u00a0of some possible\u00a0future health benefits (for someone) \u2014\u00a0it is\u00a0not committing to hand over all the data it gathers during\u00a0the study to individual study participants, saying only that it \u201cmay\u201d return information such as laboratory tests and clinical assessments, and that: \u201cWe think it\u2019s important to return as much of your information as possible in an ethical, responsible manner and in a format that is interesting and understandable.\u201d So, in other words, volunteers for this four-year \u201cquest\u201d\u00a0won\u2019t be privy\u00a0to\u00a0all the data Alphabet\u2019s divisions will be extracting from their\u00a0person.<\/p>\n We\u2019ve reached out to Verily with various questions and will update this post with any response. In a blog post<\/a>\u00a0about Project Baseline, the company writes that it is focused on \u201ccreating new tools to collect and organize information in ways previously not possible so that we can make the information useful\u201d \u2014 describing the initiative overall as a \u201cunified effort to map human health\u201d.<\/p>\n \u201c[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 \u2013 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,\u201d it adds.<\/p>\n Alphabet\/Google\u00a0has faced controversy<\/a> in the UK where its AI division, DeepMind unveiled\u00a0a big health push last year, partnering with publicly funded National Health Service Trusts 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 public\u00a0how many medical records were being shared with DeepMind to power\u00a0an app for hosting an NHS algorithm designed to\u00a0spot the early signs of a\u00a0kidney condition. An FOI request<\/a> subsequently revealed\u00a0DeepMind had been\u00a0given access to some 1.6 million patients\u2019 health data \u2014 without their knowledge or consent. The\u00a0information-sharing arrangement\u00a0remains under investigation by UK data protection watchdogs.<\/a><\/p>\n But while\u00a0Alphabet\u00a0has been able to quickly suck up vast quantities\u00a0of medical data\u00a0in the UK to power its ambitions for AI-enabled preventative healthcare because a\u00a0cash-strapped NHS is\u00a0all too eager to accept the offer of free help from a high profile, high tech outsider,\u00a0the US healthcare marketplace evidently requires a different approach to outsider\u00a0corporates gaining access to medical records at scale. Let\u2019s not forget\u00a0Google\u2019s prior attempt at generating mass adoption for\u00a0an opt-in, centralized electronic medical records and health data platform of its own failed spectacularly<\/a>. Seen from that angle, Project Baseline has rather more modest\u00a0ambitions to only<\/em>\u00a0acquire the medical records of ~10,000 US citizens \u2014 albeit this project is\u00a0also couched as\u00a0only the start. \u201cEventually we hope to expand internationally to capture health diversity on a global scale,\u201d writes Verily.<\/p>\n Featured Image: Yeko Photo Studio<\/a>\/Shutterstock<\/a><\/small><\/p>\n","protected":false},"excerpt":{"rendered":"\n
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Alphabet’s (Google’s) life sciences division Verily has launched its public pitch for a massive, multi-year health study it’s leading, along with Duke University School of Medicine, Stanford Medicine, and Google proper. Read More<\/a><\/p>\n\n<\/img><\/a>
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