References
- Steinhubl SR , MuseED , TopolEJ . Can mobile health technologies transform health care?JAMA310 ( 22 ), 2395 – 2396 ( 2013 ).
- European Commission . Digital single market, green paper on mobile health . http://ec.europa.eu/digital-agenda/en/news/green-paper-mobile-health-mhealth .
- Swan M . The quantified self: fundamental disruption in big data science and biological discovery . Big Data1 ( 2 ), 85 – 98 ( 2013 ).
- Byrom B . Wearables in clinical trials: an active interest? Applied Clinical Trials . www.appliedclinicaltrialsonline.com/wearables-clinical-trials-active-interest?pageID=4 .
- Wolfram T . Wearables: where is clinical development headed next? Applied Clinical Trials . www.appliedclinicaltrialsonline.com/print/292165?page=full .
- Kaiser J . NIH’s 1-million-volunteer precision medicine study announces first pilot projects. Science . www.sciencemag.org/news/2016/02/nih-s-1-million-volunteer-precision-medicine-study-announces-first-pilot-projects .
- Mega JL , SabatineMS , AntmanEM . Population and personalized medicine in the modern era . JAMA312 , 1969 – 1970 ( 2014 ).
- Savage N . Mobile data: made to measure . Nature527 ( 7576 ), S12 – S13 ( 2015 ).
- Swierstra T , BoeninkM , StemerdingD . Exploring techno-moral change: the case of the obesity pill . In : Evaluating New Technologies. Methodological Problems for the Ethical Assessment of Technology Developments . SollieP , DüwellM ( Eds ). Springer , Dordrecht, The Netherlands , 119 – 138 ( 2009 ).
- Vaidhyanathan S . The Googlization of Everything (and Why We Should Worry) . University of California Press , CA, USA ( 2011 ).
- Aicardi C , Del SavioL , DoveES , LuciveroF , TempiniN , PrainsackB . Emerging ethical issues regarding digital health data: on the World Medical Association draft declaration on ethical considerations regarding health databases and biobanks . Croat. Med. J.57 ( 2 ), 207 – 213 ( 2016 ).
- Metcalf J , KellerEF , BoydD . Perspectives on big data, ethics, and society. Council for big data, ethics and society . http://bdes.datasociety.net/council-output/perspectives-on-big-data-ethics-and-society/ .
- Vayena E , MastroianniA , KahnJ . Health research with novel uses of online data . Am. J. Public Health102 ( 12 ), 2225 – 2230 ( 2012 ).
- Vayena E , SalathéM , MadoffLC , BrownsteinJS . Ethical challenges of big data in public health . PLoS Comput. Biol.11 ( 2 ), e1003904 ( 2015 ).
- Comstock J . Apple taps 23andMe to bring genetic data into ResearchKit. MobiHealthNews . www.mobihealthnews.com/content/apple-taps-23andme-bring-genetic-data-researchkit .
- Power of one million. The 23andMe Blog . http://blog.23andme.com/news/one-in-a-million/ .
- Barr A . Google’s new moonshot project: the human body. The Wall Street Journal . www.wsj.com/articles/google-to-collect-data-to-define-healthy-human-1406246214 .
- Regalado A . Google wants to store your genome. MIT Technology Review . www.technologyreview.com/news/532266/google-wants-to-store-your-genome/ .
- Google Cloud Platform. Pricing . https://cloud.google.com/genomics/pricing .
- National Cancer Institute . NCI Cancer Genomics Cloud pilots . https://cbiit.nci.nih.gov/ncip/nci-cancer-genomics-cloud-pilots .
- Bort J . Thanks to Apple, 11,000 people signed up for a heart disease study in one day. Business Insider . http://uk.businessinsider.com/apple-makes-heart-disease-study-go-nuts-2015-3 .
- Cesuroglu T , van OmmenB , MalatsN , SudbrakR , LehrachH , BrandA . Public health perspective: from personalized medicine to personal health . Per. Med.9 ( 2 ), 115 – 119 ( 2012 ).
- MobiHealthNews . Apple: ResearchKit is a pipeline for future diagnostic medical apps . http://mobihealthnews.com/47611/apple-researchkit-is-a-pipeline-for-future-diagnostic-medical-apps .
- Boja ES , KinsingerCR , RodriguezH , SrinivasP . Integration of omics sciences to advance biology and medicine . Clin. Proteomics11 ( 1 ), 45 ( 2014 ).
- Google . Google Genomics and Broad Institute team up to tackle genomic data. Google Cloud Platform Blog . https://cloudplatform.googleblog.com/2015/06/Google-Genomics-and-Broad-Institute-Team-Up-to-Tackle-Genomic-Data.html .
- Stein LD , KnoppersBM , CampbellP , GetzG , KorbelJO . Data analysis: create a cloud commons . Nature523 ( 7559 ), 149 – 151 ( 2015 ).
- Topol EJ . The big medical data miss: challenges in establishing an open medical resource . Nat. Rev. Genet.16 ( 5 ), 253 – 254 ( 2015 ).
- Mittelstadt BD , FloridiL . The ethics of big data: current and foreseeable issues in biomedical contexts . Sci. Eng. Ethics22 ( 2 ), 303 – 341 ( 2015 ).
- Wilbanks JT , TopolEJ . Stop the privatization of health data . Nature535 ( 7612 ), 345 – 348 ( 2016 ).
- Wicklund E . New project to create mHealth ethics for clinical trials. mHealth Intelligence . http://mhealthintelligence.com/news/new-project-to-create-mhealth-ethics-for-clinical-trials?utm_content=buffer7b616&utm_medium=social&utm_source=linkedin.com&utm_campaign=buffer .
- Huckvale K , AdomaviciuteS , PrietoJT , LeowMK-S , CarJ . Smartphone apps for calculating insulin dose: a systematic assessment . BMC Med.13 , 106 ( 2015 ).
- Murakami H , KawakamiR , NakaeSet al. Accuracy of wearable devices for estimating total energy expenditure: comparison with metabolic chamber and doubly labeled water method . JAMA Intern. Med.176 ( 5 ), 702 – 703 ( 2016 ).
- Metz R . The struggle for accurate measurements on your wrist. MIT Technology Review . www.technologyreview.com/review/538416/the-struggle-for-accurate-measurements-on-your-wrist/ .
- Duhaime-Ross A . Apple’s new ResearchKit: “Ethics quagmire” or medical research aid? The Verge . www.theverge.com/2015/3/10/8177683/apple-research-kit-app-ethics-medical-research .
- Jardine J , FisherJ , CarrickB . Apple’s ResearchKit: smart data collection for the smartphone era?J. R. Soc. Med.108 ( 8 ), 294 – 296 ( 2015 ).
- Smith A . Smartphone ownership-2013 update. Pew Research Center . http://pewinternet.org/Reports/2013/Smartphone-Ownership-2013.aspx .
- Pai A . Are medical researchers passing the buck on porting ResearchKit to Android? MobiHealthNew . http://mobihealthnews.com/47657/are-medical-researchers-passing-the-buck-on-porting-researchkit-to-android/ .
- Aicardi C , DamjanovicovaM , Del SavioLet al. Could DTC genome testing exacerbate research inequities? Hastings Bioethics Forum Blog . www.thehastingscenter.org/response-to-call-for-essays-could-dtc-genome-testing-exacerbate-research-inequities/ .
- Tung JY , ErikssonN , KieferAKet al. Characteristics of an online consumer genetic research cohort. 23andme . http://blog.23andme.com/wp-content/uploads/2011/10/ASHG2011poster-JYT.pdf .
- boyd d , CrawfordK . Critical questions for big data . Information, Commun. Soc.15 , 662 – 679 ( 2012 ).
- Leonelli S . Introduction: making sense of data-driven research in the biological and biomedical sciences . Stud Hist Philos. Biol. Biomed. Sci.43 ( 1 ), 1 – 3 ( 2012 ).
- Crawford K . The hidden biases in big data. Harvard Business Review . https://hbr.org/2013/04/the-hidden-biases-in-big-data .
- Lerman J . Big data and its exclusions . Stan. L. Review Online66 ( 55 ), 55 – 63 ( 2013 ).
- Crawford K , MiltnerK , GrayML . Critiquing big data: politics, ethics, epistemology . Int. J. Commun.8 , 1663 – 1672 ( 2014 ).
- Gymrek M , McGuireAL , GolanDet al. Identifying personal genomes by surname inference . Science339 ( 6117 ), 321 – 324 ( 2013 ).
- Barocas S , NissenbaumH . Computing ethics big data’s end run around procedural privacy protections . Commun. AMC57 ( 11 ), 31 – 33 ( 2014 ).
- Lucivero F , PrainsackB . The lifestylisation of healthcare? “Consumer genomics” and mobile health as technologies for healthy lifestyle . Appl. Transl. Genomics4 , 44 – 49 ( 2015 ).
- Steel E , DemboskyA . Health apps run into privacy snags. Financial Times . https://www.ft.com/content/b709cf4a-12dd-11e3-a05e-00144feabdc0 .
- Zang J , DummitK , GravesJ , LiskerP , SweeneyL . Who knows what about me? a survey of behind the scenes personal data sharing to third parties by mobile apps. Technology Sciencehttp://techscience.org/a/2015103001/ .
- Turow J , HennessyM , DraperN . The trade-off fallacy: how marketers are misrepresenting American consumers and opening them up to exploitation . www.asc.upenn.edu/sites/default/files/TradeoffFallacy_1.pdf .
- Olson P . For Google Fit, your health data could be lucrative . Forbes.www.forbes.com/sites/parmyolson/2014/06/26/google-fit-health-data-lucrative/ .
- Solove DJ . Understanding Privacy . Harvard University Press , MA, USA ( 2008 ).
- Nissenbaum H . A contextual approach to privacy online . Daedalus140 , 32 – 48 ( 2011 ).
- Wilbanks J , FriendSH . First, design for data sharing . Nat. Biotechnol.34 ( 4 ), 377 – 379 ( 2016 ).
- Hodson H . Did Google’s NHS patient data deal need ethical approval? New Scientist . www.newscientist.com/article/2088056-did-googles-nhs-patient-data-deal-need-ethical-approval/ .
- Lomas N . UK healthcare products regulator in talks with Google/DeepMind over its Streams app. TechCrunch . https://techcrunch.com/2016/05/18/uk-healthcare-products-regulator-in-talks-with-googledeepmind-over-its-streams-app/ .
- Allen J , McNamaraB . Reconsidering the value of consent in biobank research . Bioethics25 ( 3 ), 155 – 166 ( 2011 ).
- Kotz J . Bringing patient data into the open . SciBX5 ( 25 ). www.nature.com/scibx/journal/v5/n25/full/scibx.2012.644.html .
- Personal data for the public good: new opportunities to enrich understanding of individual and population health Health Data Exploration Project . http://hdexplore.calit2.net/wp-content/uploads/2015/08/hdx_final_report_small.pdf .
- Ipsos Mori Research for The Royal Statistics Society . New research finds data trust deficit with lessons for policymakers. Ipsos MORI . www.ipsos-mori.com/researchpublications/researcharchive/3422/New-research-finds-data-trust-deficit-with-lessons-for-policymakers.aspx .
- Gandhi M . WangT . Digital Health Consumer Adoption: 2015. Rock Health . https://rockhealth.com/reports/digital-health-consumer-adoption-2015/#survey-overview .
- Regalado A . Tech companies are not trusted with health data. MIT Technology Review . www.technologyreview.com/news/543536/tech-companies-are-not-trusted-with-health-data/?utm_campaign=newsletters&utm_source=newsletter-weekly-biomedicine&utm_medium=email&utm_content=20151117 .
- Prainsack B . The powers of participatory medicine . PLoS Biol.12 ( 4 ), e1001837 ( 2014 ).
- Harris A , WyattS , KellySE . The gift of spit (and the obligation to return it): how consumers of online genetic testing services participate in research . Inf. Commun. Soc.16 ( 2 ), 236 – 257 ( 2013 ).
- Crow D . IBM strikes digital health deal with Apple, Medtronic and J&J. Financial Times . www.ft.com/cms/s/0 .
- Science as an Open Enterprise. The Royal Society . https://royalsociety.org/∼/media/policy/projects/sape/2012-06-20-saoe.pdf .
- Open Data in a Big Data World . Science International . www.icsu.org/science-international/accord/open-data-in-a-big-data-world-short .
- Morozov E . Europe is wrong to take a sledgehammer to big Google. Financial Times . www.ft.com/cms/s/0 .
- Piller C . Google’s biotech venture hit by ethical concerns over deal with luxury clinic. STAT . www.statnews.com/2016/04/07/google-verily-ethical-questions/ .
- Herper M . Surprise! With $60 million Genentech deal, 23andMe has a business plan. Forbes . www.forbes.com/sites/matthewherper/2015 .
- Paul R , ClayA . An open source approach to medical research. Stanford Social Innovation Review . http://ssir.org/articles/entry/interview_an_open_source_approach_to_medical_research .
- Farr C . 23andMe lands $1.4 million grant from NIH to detect genetic roots for disease. Reuters . www.reuters.com/article/us-healthcare .
- Huberman BA . Sociology of science: big data deserve a bigger audience . Nature482 ( 7385 ), 308 ( 2012 ).
- Check Hayden E . Why biomedical superstars are signing on with Google . Nature526 ( 7574 ), 484 – 485 ( 2015 ).
- Regalado A . Why America’s top mental health researcher joined Alphabet. MIT Technology Review . www.technologyreview.com/news/541446/why-americas-top-mental-health-researcher-joined-alphabet/ .
- Lee SM . Apple is on the hunt for medical tech talent. BuzzFeed . www.buzzfeed.com/stephaniemlee .
- Apple . ResearchKit and CareKit . www.apple.com/researchkit/ .
- Kaiser J . Google X sets out to define healthy human. Science . www.sciencemag.org/news/2014/07/google-x-sets-out-define-healthy-human .
- Mayer-Schonberger V , CukierK . Big Data: a Revolution that Will Change How We Live, Work and Think . John Murray , London, UK ( 2013 ).
- Anderson C . The end of theory: the data deluge makes the scientific method obsolete. WIRED . www.wired.com/2008/06/pb-theory/ .
- Coveney P , DoughertyE . Big data has not revolutionised medicine – we need big theory alongside it. The Conversation . http://theconversation.com/big-data-has-not-revolutionised-medicine-we-need-big-theory-alongside-it-55356?utm_content=buffer4529f&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer .
- Bowker GC . The theory/data thing . Int. J. Commun.8 ( 2043 ), 1795 – 1799 ( 2014 ).
- Kitchin R . Big data, new epistemologies and paradigm shifts . Big Data Soc.1 ( 1 ), 1 – 12 ( 2014 ).
- Gitelman L . “Raw Data” is an Oxymoron . MIT Press , MA, USA ( 2013 ).
- National Research Council (US) Committee on a framework for developing a new taxonomy of disease . Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease . US National Academies Press , Washington, DC, USA ( 2011 ).
- European Science Foundation . Personalised medicine for the European citizen – towards more precise medicine for thediagnosis, treatment and prevention of disease . www.esf.org/uploads/media/Personalised_Medicine.pdf .
- Duke Clinical & Translational Science Institute . Duke and Stanford to assist Google X in defining health . www.dtmi.duke.edu/news/duke-and-stanford-assist-google-x-defining-health .
- Why Google DeepMind wants your medical records. BBC News . www.bbc.com/news/technology-36783521 .