Perspective

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The Googlization of health research: from

disruptive innovation to disruptive ethics

Consumer-oriented mobile technologies offer new ways of capturing multidimensional Tamar Sharon
health data, and are increasingly seen as facilitators of medical research. This has Philosophy Department, Maastricht
University, Grote Gracht 90-92, 6211 SZ,
opened the way for large consumer tech companies, like Apple, Google, Amazon and
Maastricht, The Netherlands
Facebook, to enter the space of health research, offering new methods for collecting, tamar.sharon@ maastrichtuniversity.nl
storing and analyzing health data. While these developments are often portrayed
as ‘disrupting’ research in beneficial ways, they also raise many ethical issues. These
can be organized into three clusters: questions concerning the quality of research;
privacy/informed consent; and new power asymmetries based on access to data and
control over technological infrastructures. I argue that this last cluster, insofar as it
may affect future research agendas, deserves more critical attention.

First draft submitted: 8 July 2016; Accepted for publication: 30 August 2016; Published
online: 13 October 2016

Keywords:  23andMe • Baseline Study • big data • data-intensive medicine • ethical issues
• Google Genomics • health apps • privacy • ResearchKit

The use of consumer-oriented mobile
applications and wearable sensors for collect-
ing personal health data and associated inter-
net services have drawn growing attention
from medical professionals and public health
officials in recent years, in light of their per-
ceived potential to improve health and help
reduce healthcare spending [1,2] . Expected
impacts on individual and population health,
however, are only one end of the spectrum of
the purported contribution of these technol-
ogies to health and medicine. On the other
end, the understanding that these technolo-
gies offer new methods for collecting, storing
and, in some cases, analyzing complex and
abundant health-related data, has also consti-
tuted them as important facilitators of data-
intensive biomedical research. This has led
to a growing number of projects that seek to
harness this potential, from individual, quan-
tified self-type self-experiments [3] , to clinical
studies using wearables [4,5] , to new types of
population-wide studies and cohorts [6–8] . At
the same time, this has opened the way for
major consumer tech companies, which have
had little interest in health and medicine in
the past, to enter the space of health research
in an unprecedented way. From Apple’s
ResearchKit, which allows researchers to
carry out medical studies on iPhones, to
Google’s Baseline Study, which aims to paint
a picture of ‘what it means to be healthy’
and its Google Genomics cloud service,
to the Google-backed direct-to-consumer
genetic testing company 23andMe, and
Facebook’s recent ‘Genes for Good’ app,
these tech giants seem determined to dis-
rupt, if not revolutionize, how medical
research is carried out.
As in other contexts, technological disrup-
tion also provokes ethical disruption [9] . The
novelty of these research approaches, coupled
with the fact that these devices and services
are owned by entities outside the confines of
traditional health research, raises a host of
part of
ethical issues that it is important to identify

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Perspective  Sharon
and engage with while these developments are still in
an early stage. These can be organized into three broad
clusters: epistemological issues pertaining to the qual-
ity of the research; privacy-related issues and informed
consent; and new power asymmetries that may emerge
in this new research ecosystem. These clusters are not
exhaustive of the ethical issues at stake in what we
might call the ‘Googlization of health research’ [10] ,
but together encompass some of the more timely and
novel aspects of this understudied phenomenon. Thus,
while some of these concerns are inherent to contem-
porary forms of research using large digital datasets
and mobile-enabled data collection, such as popula-
tion bias and privacy protection, they are problema-
tized in new ways in the type of research discussed
here. Moreover, other issues, particularly those per-
taining to new power asymmetries, are more specific to
research facilitated by large tech companies described
here, and have been hitherto relatively neglected in the
research ethics literature. Yet, insofar as these power
asymmetries may affect the shaping of future research
agendas, they deserve greater critical attention from
medical researchers, ethicists and policy makers than
is currently the case. In other words, the Googliza-
tion of health research, as other types of data­-intensive
and digitized research, demands a rethinking of ethi-
cal, legal and regulatory frameworks. This article does
not aim to conceptualize what shape such frameworks
should take, an effort that is beyond its scope. Rather,
it seeks to contribute to the growing body of cross-
disciplinary work that does [11–14] , by charting the
ethical concerns at stake in this particular aspect of
data-intensive research. The article first discusses some
of the benefits of the Googlization of health research,
focusing on several examples, and then discusses the
three clusters of ethical issues as potential risks that
weigh against these benefits.
Tools to revolutionize medical studies?
Apple’s first big push into healthcare took place with
the release of the HealthKit in September 2014, a
software platform that collects a range of health, fit-
ness and medical data about a user and brings these
together into one place for the user to view. This can
be data generated by the iPhone’s own sensors (steps
and distance), data that is manually entered by users
(body temperature, lab test results), or data that is col-
lected from other health and fitness apps that users
allow HealthKit to connect to (such as glucose meters
or blood pressure cuffs). The HealthKit’s aim to pro-
vide a catch-all platform for health data was not in
itself a revolutionary idea, preceded by somewhat less
successful attempts like Google Health and Microsoft’s
HealthVault. Its real potential seems to lie in how it
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makes this data available for sharing with health-
care professionals, particularly by working alongside
the more innovative ResearchKit software that was
released shortly after, in March 2015.
ResearchKit is an open source framework designed
for actually running medical studies. It allows research-
ers who partner with Apple to develop apps that iPhone
users can download from the Apple Store, and on which
studies can be carried out using the device’s sensors or
through surveys. The software collects data on partici-
pants and feeds it directly back to researchers. Within
weeks of its launch, partnerships sprouted up between
Apple and some of the leading medical institutes
worldwide, including Stanford Medicine, Yale Univer-
sity, Mount Sinai Hospital, the Dana-Farber Cancer
Institute, and outside of the USA, Xuanwu Hospital
in Beijing, Oxford University, and just recently, Leiden
University in The Netherlands. Currently, more than
20 studies including over 100,000 participants are
being carried out using the ResearchKit, in cardio-
vascular disease, Parkinson’s, asthma, diabetes and
other conditions, and this number is quickly grow-
ing. This year, Apple announced that ResearchKit
apps will also begin incorporating genetic data, via a
module designed by the consumer genetics company,
23andMe. Stanford’s MyHeartCounts app and Mount
Sinai’s Asthma Health app, for example, will both use
genetic data from users’ 23andMe account [15] .
23andMe, the consumer genetic testing company
backed by Google Ventures and Facebook billionaire,
Yuri Milner, is not a newcomer to the medical research
space. The company launched in 2007 marketing
direct-to-consumer DNA kits, but with clear intent
to move beyond this primary business by developing
a research arm, 23andWe, in 2008. Despite important
setbacks involving US FDA demands to halt sales of
its disease diagnostic product in the USA in 2013, the
company has pursued its research activities in collabo-
ration with industry and academia, using the genetic
and online survey data generated by its customers. To
date, this has resulted in over 40 scientific publica-
tions. In June 2015, the company announced that it
had reached a milestone of 1 million genotyped cus-
tomers  [16] , making it the largest DNA database of
consented, recontactable subjects in the world.
Google’s foray into health and medicine encompasses
a very broad reach, from its own version of the Apple
HealthKit, Google Fit, to the development of cancer-
detecting sensors powered by nanoparticles, a smart
contact lens for glucose tracking and its Calico project
to ‘cure death’. Like Apple, Google’s medical research
arm, Verily (formerly known as ‘Google Life Sciences’),
is exploring a number of different avenues for tying
personal data to medical professionals and researchers.
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 The Googlization of health research: from disruptive innovation to disruptive ethics  Perspective
The Baseline Study, for example, one of Verily’s larger
projects launched in collaboration with Stanford and
Duke Universities in July 2014, aims to enroll 10,000
volunteers, many of them healthy, and use testing and
sensors to track their clinical, molecular, imaging,
genetic and microbiome data, and in some cases, com-
bine these with participants’ electronic health records.
Such ‘baseline’ data, it is hoped, will help create a pic-
ture of normal health [17] , allow researchers to capture
early signs of transition to ill health and develop pre-
ventive treatments. Google has also been busy mak-
ing its cloud computing platform a necessary passage
point for genomics research. Google Genomics aims to
offer a centralized database into which researchers can
move their own genome data and run queries (‘Google
Big Query’) on millions of genome sequences at once.
Google is not alone in the race to become the back
end of genomic research. It is competing with Ama-
zon, Microsoft and IBM, and a price war with Amazon
has brought down the cost of storage to just US$25 a
year for a genome [18,19] . In 2014, the National Cancer
Institute launched a broad effort to begin transferring
copies of its Cancer Genome Atlas into cancer genome
clouds, with a series of pilot projects awarded to col-
laborations using Google and Amazon clouds [20] .
As these high profile collaborations attest to, a num-
ber of these initiatives are being met with enthusiasm
on the part of researchers and research institutes. And
this is because they address and seek to overcome
important limitations in traditional approaches to
research that have become more striking in light of
the possibilities offered by mobile technologies and big
data analytics, including novel methods for recruit-
ing study participants, collecting data, storing large
datasets and analyzing them. Data collection using a
mobile device, because it can be done remotely, out-
side the walls of the clinic so to speak, opens up new
possibilities for how much, how frequently and what
kind of data are gathered. With hundreds of millions
of iPhone users around the world, the ResearchKit
transforms the iPhone into a device that crowdsources
medical research, increasing the pool of research sub-
jects to potentially all iPhone users (though most
ResearchKit apps are currently only available in the
USA). Early ResearchKit apps have been a success in
this sense: Apple likes to boast that within 24 hours of
the launch of Stanford’s cardiovascular study, 11,000
participants had signed up [21] . Similarly, the Parkin-
son mPower app was downloaded by 680 people in its
first 3 h, and the Icahn School of Medicine’s asthma
study app enrolled more than 8000 participants
within 6 months, all without any direct contact with
researchers.
Mobile devices and wearables also offer a much
future science group
more continuous stream of data than the episodic data
used in clinical trials, and they extend data collection
to types of data that were not previously available to
researchers, but are increasingly recognized as critical
in integrative approaches to understanding health and
disease  [22] . These include multidimensional behav-
ioral, social and environmental information that is
generated as participants go about their daily lives
rather than in a laboratory, and can be captured by
the type of technical sensors that are built-in to smart-
phones and wearables, such as accelerometers, micro-
phones, gyroscopes and GPS sensors. The ResearchKit
mPower Parkinson’s app, for example, uses sensors to
track tremors, balance and gait, certain vocal charac-
teristics and memory, combined with surveys and tasks
to be completed before and after medication. Dr Ray
Dorsey, the neurology expert for the study, has said,
“We’re seeing how people do on Saturdays and Sun-
days, how people do between 5 pm and 8 pm … Here-
tofore we’d had no good way of measuring that” [23] .
“At the individual level,” a Stanford enthusiast has
explained, “we just haven’t had any data like this at all
… It’s simply not possible to detect it until you have
mobile devices” [8] .
The explosion of genomic data generated by research
labs has rendered the question of storage and comput-
ing power for comparing it crucial [24] . And just as
research enabled by mobile devices promises to over-
come the limitations of traditional randomized con-
trol trials, commercial clouds promise to overcome the
limitations of traditional hardware and software used
by universities and hospitals. As per the Google Cloud
Platform blog, “To deal with genomic information at
scale, the life science community needs new technolo-
gies to store, process, explore, and share. Two years
ago, with this in mind, we formed Google Genomics
to help the life science community organize the world’s
genomic information and make it accessible and use-
ful, using some of the same technologies that power
Google services like Search and Maps” [25] .
Indeed, on the website that announces the cancer
genomics cloud pilots, the National Cancer Insti-
tute explains that the traditional model for analyzing
genomic data has become ‘unsustainable’ [20] . The
technological infrastructure of even large research
institutes like the NIH is thus presented as a major
hindrance to advancing research. But companies like
Google and Amazon do not only supply the techno-
logical infrastructure for the vast repositories that
genomics researchers hope will form a global ‘cloud
commons’ [26] . Importantly, it is their analytical exper-
tise, developed to run experiments on large databases
of spam, web documents, internet search queries and
consumer purchases, which is deemed valuable for
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Perspective  Sharon
research using big datasets: – while genomic data
are very big, they are still smaller than what these
companies are used to handling.
These initiatives, like much tech innovation today,
are discussed in terms of “disruption” [27] ; as offering
the opportunity to “flip clinical trial design and pro-
tocols on their head” [5] , or to “disrupt the way that
genomic studies are conducted,” as per 23andMe’s
Research Portal. Certainly, traditional research mod-
els, infrastructure and analytics capacities seem pain-
fully slow and outdated in comparison. However, as a
number of commentators have begun to argue, such
disruptive practices in the biomedical field raise serious
ethical challenges that need to be identified and criti-
cally assessed [11–12,14,28–29] . These can be organized
in terms of the quality of the research, privacy and
informed consent, and new power asymmetries.
Quality of research
Data quality
Collecting research data via wearable devices and
mobile apps poses a number of challenges that arise
precisely from the less rigorous nature of digital and
remote data gathering that is promoted as its big-
gest advantage. Concerns about the quality of the
data generated by these platforms have been raised
by some researchers [30] . In many cases, these data
are self-reported, which could lead to intentional or
nonintentional false reporting. Passive data collection
remedies this, but only to an extent, since without
physical contact between researchers and participants
there is no way of verifying that the data collected is
generated by the individual who is believed to be in
the study (phones and wearables can be shared), nor
even that the participant actually has the condition
being studied (in order to participate in a ResearchKit
study participants only have to provide consent). This
raises the possible burden of an overload of ‘dirty’ data,
particularly in light of ongoing discussions concerning
the accuracy of wearables and tracking devices [31,32] .
Devices can count steps, calories and heart rate in dif-
ferent ways, and render different readings depending
on manufacturer, where they are worn on the body,
and even what type of body they are worn on [33] .
Population bias
Another concern involves the potential for population
bias. Apple’s ResearchKit came under some criticism
for this as soon as it was released [34,35] . Commentators
have noted that the samples recruited into ResearchKit
studies are not necessarily representative of the pop-
ulation of interest. iPhone users tend to be younger,
better educated and wealthier than both the general
population and the population of smartphone users,
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the vast majority of whom have Android devices [36] .
Yet diseases vary according to each of these variables.
Thus the ResearchKit population will skew toward a
specific demographic that may be quite different than
the populations affected by the diseases it seeks to
study. At its inception, the ResearchKit was only avail-
able for iPhones, but Apple did make the software open
source. Expanding it to Android and Windows operat-
ing systems is one way that commentators suggest deal-
ing with the limited inferential power of ResearchKit
studies, though the effort this requires on the part of
developers seems to currently be a hindrance [37] . Con-
versely, the development of an Android framework
similar to the ResearchKit – the ResearchStack – was
recently released by Cornell Tech and Open mHealth.
This lack of diversity is also a concern in genetic
research powered by social media. 23andMe currently
constitutes a very large dataset of DNA samples avail-
able for study. Yet the information that is available on
the demographics of users of the direct-to-consumer
service who have agreed to participate in research indi-
cates that this population is not representative, with
a clear over-representation of white, educated and
affluent groups [38] . Researchers at 23andMe are not
oblivious to this issue and note that representability
is only really an issue for genome-wide association
studies when there is genetic variation underlying the
demographic differences that cannot be controlled for,
and that many genome-wide association studies use
nonrepresentative populations for reasons of practical-
ity  [39] . Similarly, researchers currently working with
the ResearchKit are often quick to indicate that rep-
resentability is an issue for most studies, not just ones
using mobile data collection methods. All data sets are
samples, in this sense, and can never be entirely repre-
sentative. What is suggested here, however, is that the
limited inferential power of such studies is offset by the
sheer volume of the sample.
This assumption is a characteristic of ‘big data’
science, and part of what makes it so attractive, both
to scientists and to the popular imagination. But, as a
number of philosophers of science and critical data the-
orists argue [40–42] , size is often wrongfully associated
with objectivity, and the absence of bias. This tendency
to dismiss an awareness to bias as inherent to all data-
sets – no matter their size – is further exacerbated by
what Jonas Lerman [43] has called ‘big data’s exclusions’:
those many people whose information is not regularly
collected or analyzed because they do not routinely
engage in data-generating practices. Crawford et al.
write, “Big data continues to present blind spots and
problems of representiveness, precisely because it can-
not account for those who participate in the social
world in ways that do not register as digital signals. It
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 The Googlization of health research: from disruptive innovation to disruptive ethics  Perspective
is big data’s opacity to outsiders or subsequent claims to
veracity through volume that discursively neutralizes
the tendency to make errors, fail to account for certain
people and communities, or discriminate” [44] .
Such possible discriminatory effects indicate that
population biases are not just an epistemological issue,
but, importantly, a question of social justice. In the
case of 23andMe, as the authors of a Hastings Cen-
ter blog post argue, research may skew toward con-
ditions that affect its privileged population of users,
a propensity that can aggravate health disparities [38] .
Privacy, anonymization & informed consent
Who will see your data?
Privacy is a widespread concern in new forms of data-
intensive science and research. Much of this type of
research is predicated on the idea that the larger the
datasets, and the more these datasets can be linked,
the greater scientific insights can be drawn. At the
same time, advanced computational techniques and
data mining approaches developed in recent years
make it possible to reidentify data that has been ano-
nymized  [45,46] . Anonymity, in other words, which
had traditionally been a mechanism for ensuring par-
ticipants’ privacy, is increasingly difficult to guarantee.
This tension is further exacerbated in the context of
research facilitated by commercial actors in several
ways. Consumer apps and devices that generate health-
related data occupy somewhat of a gray area between
the highly regulated medical domain and the less regu-
lated consumer market [47] . Privacy and data protec-
tion legislation for health information in the EU and
the USA does not necessarily apply to data shared in
such devices, nor to personal health data shared by an
individual voluntarily in a social network or with a
third party. This means that health-related data shared
with an app or wearable device can be sold, shared and
stored in various ways depending on the manufactur-
er’s privacy policy and terms of service. Some studies
have shown that this is indeed the case, with many
popular health and fitness apps, including Nike and
Fitbit, sharing data with others within their ‘corporate
umbrella’, and sometimes with external companies,
including advertisers and insurers [48,49] . Developers
usually argue that sharing of data is only carried out
with the explicit consent of users, which is provided
by agreeing with the terms of service documents that
accompany software. But evidence that users spend
little time reading these agreements, that they are not
well understood, or that users feel resigned to agree
to them [50] , means this type of data sharing is mor-
ally dubious, certainly in the case of sensitive health-
related information. Anonymization, furthermore, can
clash with financial interests. As some commentators
future science group
have suggested, insofar as advertising drives the large
majority of Google’s revenues, a platform like Google
Fit could represent an additional means for the com-
pany to tap into specific health-related data that flows
between apps for advertising purposes [51] .
Contextual approaches to privacy, as those devel-
oped by Helen Nissenbaum and Daniel Solove [52,53] ,
are helpful for understanding what is at stake in this
moral ambiguity. These theorists argue that privacy
expectations, or how privacy is valued, will differ
depending on contextual circumstances: on the nature
of the information, the type of relationship in which
information is transferred and the uses to which it is
put. Different norms, Nissenbaum [53] maintains, exist
for regulating information in different contexts – be
they medical, social or commercial. Thus informa-
tion shared with one’s doctor is not governed by the
same contextual norms as information shared with an
employer. Yet the ease of flow of information that is
digital contributes to a transgression of contexts, in
which individuals’ expectations of data privacy may be
violated and through which they may become exposed
to a contextual interpretation. In the framework of
medical research using digital data, then, there is a
relatively high likelihood of context transgression.
Apprehensive of these intricacies, Apple has been
proactive about clarifying its commitment to protect-
ing privacy. At the launch of the ResearchKit, Apple
executive Jeff Williams ensured audiences that “Apple
will not see your data.” The ResearchKit is designed so
that data are collected on the iPhone but are not avail-
able to Apple. Instead, it is encrypted and sent to the
researchers who are conducting the study. For example,
the first five ResearchKit studies were designed in col-
laboration with Sage Bionetworks, a nonprofit research
organization that gathers the data collected on a par-
ticipant’s phone, de-identifies and codes it, and hosts it
on a platform where researchers can access it. But Sage
is very open in acknowledging the limits of anonymity:
“the biggest risk in these studies is to your privacy,” the
organization’s chief commons officer John Wilbanks
has noted, “We’re going to de-identify it, but because
we’re going to make it available for lots of research,
there exists a chance that someone could re-identify
you”  [34] . Sage, who is positioning itself as an avant-
garde in mobile health research, has also been active in
developing other data-sharing mechanisms that Apple
has taken on board, such as the ‘e-consent’ method-
ology for acquiring informed consent from study par-
ticipants [54] . This involves displaying information con-
cerning the study to participants using text, images and
sometimes video, followed by a test that participants
need to take demonstrating their understanding of the
material. As some commentators have remarked [35] ,
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Perspective  Sharon
however, this consent structure leaves several impor-
tant issue unresolved. Because the questions asked from
participants are yes or no questions, a researcher cannot
gauge how well a participant has understood the risks
involved, and more importantly, there is no possibility
for participants to ask questions of clarification, as can
be done in face-to-face encounters.
Apple also requires that ResearchKit app develop-
ers agree not to share data with third parties or sell
data, and studies conducted via the ResearchKit
must obtain prior approval from an independent
ethics review board. In this way, Apple has basically
outsourced responsibility for compliance with ethi-
cal guidelines to the researchers interested in using
the ResearchKit. But there is no requirement, for
example, that future ResearchKit apps work with
Sage Bionetworks, and as an open-source platform,
different data management models can be imple-
mented. Furthermore, privacy issues remain concern-
ing all the other devices and apps that the HealthKit
repository and ResearchKit apps draw data from. For
example, the uBiome app that will study the inter-
action between the microbiome and weight manage-
ment will connect with smart scales, activity track-
ers and diet-tracking apps like MyFitnessPal. The
privacy policies of all these devices need to be taken
into consideration as well.
No legal issues related to consent have emerged with
Apple ResearchKit studies so far. But Google’s artificial
intelligence offshoot, DeepMind, is currently the focus
of an unfolding controversy concerning the terms of a
data-sharing partnership with three NHS hospitals in
London that grants Google access to fully identifiable
information on 1.6 million patients. The patient data
are being used to develop an app for monitoring kidney
conditions, but there are concerns over whether Google
received consent from patients and ethical approval
from the appropriate regulatory body [55] . DeepMind
and the Royal Free NHS Foundation have rebutted
these criticisms, claiming that the collaboration does
not require patient consent because it does not aim to
do research, but is being used for ‘direct patient care’
– for which there is ‘implied consent’. Commentators,
however, have noted that it is not at all clear how the
1.6 million people whose data are being shared will
indeed directly benefit from the app [56] . Moreover, the
appeal to the notion of direct care implies a distinc-
tion between research and treatment/diagnosis, and
between intended and secondary uses of data, that may
be increasingly difficult to uphold in light of emerging
forms of health and medical science that focus on data
analytics rather than bodily intervention [11] , and that
use machine-learning techniques that necessitate large
amounts of data.
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A looming threat of context transgression
Challenges to the traditional understanding of
informed consent – that takes place face-to-face and
is given for specific research protocols during a specific
time frame – are not particular to the examples dis-
cussed here. They are common to many contemporary
forms of research using big digital datasets, where it is
not possible to predict all future scenarios of data use
and the risks these may pose at the time of data col-
lection. In light of this, they are being supplemented
by new models of ‘open’, ‘broad’ and ‘portable’ con-
sent  [57,58] . It is conceivable that these models of con-
sent come to be accepted as ethical because, while they
do allow for data to be ‘repurposed’ for other research
protocols, the overall purpose remains research, albeit
in a broad sense. To use Nissenbaum’s terminology,
there is not a transgression of contexts in such cases.
But the commercial nature of the actors in the types
of research discussed here, and the unavoidable ques-
tion of who stands to benefit and in which way from
research results, does occasion an inevitable looming
threat of context transgression, that can result in a
‘trust gap’. Studies conducted in the USA and in the
UK indicate that people are in principal skeptical of
sharing health data with commercial companies, while
they are generally much more willing to share that data
with research institutions [59,60] . In one survey, as little
as 8% of respondents said they would share their health
data with a technology company [61] . One commenta-
tor has argued that an awareness of this ‘trust gap’ may
actually be a strong incentive for these companies to
partner with trusted public research institutions, rather
than embark on this trajectory entirely alone [62] . At
the least, the potential for such a trust gap goes a long
way to explain the widespread mobilization of the rhet-
oric of participatory medicine and the common good
that these companies have adopted [63,64] . Including
– for example, Facebook’s depiction of its ‘Genes for
Good’ collaboration with the University of Michigan
as ‘research for the common good’, 23andMe’s claim
that, “your genetics could help find the answer to
someone else’s disease,” and an IBM Watson execu-
tive’s statement that, “the generation who buy Apple
Watches are interested in data philanthropy” [65] .
Thus, underpinning these new types of research is an
unresolved tension that emerges when altruistic modes
of behavior and financial profit-seeking overlap; and
this in ways that are often not transparent.
New power asymmetries
How open will datasets be?
This tension suggests that the type of disruption that
is taking place in these new approaches to health and
medical research is not limited to the traditional remit
future science group
 The Googlization of health research: from disruptive innovation to disruptive ethics  Perspective
of research ethics, such as data quality, privacy pro-
tection and informed consent. It also raises significant
questions of power differentials and control, as a num-
ber of social scientists working in the field of critical
data studies have begun to stress [40–44] . Much of the
enthusiasm surrounding research using large digital
datasets generated by mobile technologies or social
media stems from the idea that these data may help
constitute a new ‘global medical resource’ [27] that sci-
entists will be able to easily access and tap into. This
is predicated on the idea that datasets will be open.
Indeed, sharing and openness of data have become key
terms in envisioning the benefits of data-intensive sci-
ence  [66,67] . But as corporations start assisting in the
compilation of large health datasets, or building them
themselves, they will also become, to various degrees
and in various configurations, mediators, gatekeep-
ers and proprietors of those datasets [29,68] . There is
no guarantee, in other words, that these datasets will
become open repositories of clinical information.
A recent report on Google’s Baseline Study, for
example, discusses Verily’s plans to sell access to the
fine-grained health data it is collecting on the 10,000
volunteers it hopes to recruit to pharmaceutical com-
panies  [69] . The company plans a ‘lockout’ period, the
details of which have not yet been disclosed, when
only paying customers and Verily’s academic part-
ners, Stanford and Duke, will be allowed access to
the data. Based on the projected costs of the study
(US$45,000–110,000 per volunteer), the author of the
report suggests that Verily would have to sell access to
data for over US$1 billion to cover costs. 23andMe,
likewise, has sought to enter into collaborations with
large pharmaceutical companies and biotech compa-
nies since its inception. In 2014, it announced a 10,000
subject collaboration with Pfizer to study bowel disor-
ders, and last year the company signed a series of ten
new deals that indicate just how high the price of access
to its 1 million strong genetic data base has become –
beginning with a US$10 million deal with Genentech
(with further payments of up to US$50 million) for
access to the genomes of 3000 Parkinson’s patients
or their first-degree relatives [70] . The fact that these
companies have commercial interests and need to cover
costs is not the issue here, even as this does problema-
tize appeals to research participants’ altruism and good
will. The point here is that privately held or mediated
databases contrast with visions of science as an ‘open
enterprise’  [66] , notions of a ‘genomic commons’ [26]
and ‘open source approaches to medical research’ [71] .
This, furthermore, is particularly problematic when
public money is channeled, indirectly or directly, to
their development, as has been the case with 23andMe,
which recently secured a US$1.4 million research grant
future science group
from the NIH to expand its database [72] , and with
recent National Cancer Institute funding of Google
and Amazon run genome clouds.
Thus the expansion of datasets collected by private
companies does not only pose problems of scientific
rigor, like verification, reproducibility and generalizabil-
ity. It may also create new digital divides between private
companies and public research institutions, and between
well- and less well-resourced universities [29,40,73] . Com-
panies may restrict access to data repositories to institu-
tions wealthy enough to pay the right price, or to their
own researchers. It is known, for example, that Google
and Apple are actively recruiting life scientists from uni-
versities and national institutes in the USA [74–76] , begin-
ning with Google’s hiring of Thomas Insel, the director
of the National Institutes of Mental Health, last year.
This can produce important imbalances in the current
research system, where a relatively limited number of
researchers will have privileged access to important data
sources, and will produce a different type of research
than those without. Another possible risk, noted by some
in relation to genome clouds [26] , is that one single pro-
vider may gain a quasi-monopoly and control pricing,
with deleterious effects on science. As boyd and Craw-
ford [40] urge, while such efforts to demarcate research as
‘insiders’ and ‘outsiders’ certainly is not something new
to the scientific community, it is paramount that ques-
tions of who gets access, for what purpose and with what
constraints be put forward.
New forms of expertise
Access is not the only issue at stake in this digital
divide. Importantly, the new forms of technological
and computational expertise that these companies
bring to the table may also contribute to a redrawing
of the research ecosystem, with implications for the
shaping of future research agendas. As discussed, one
of the advantages of these new models of data collec-
tion and research is conceived in terms of cutting-edge
technological infrastructures (like wearable, always-on
data captors and clouds), and data analytics capacities
(like artificial intelligence and machine-learning algo-
rithms), that far exceed those available at universities
and hospitals. On the website of Apple’s ResearchKit,
Dr Helen Link Egger of Duke University is quoted as
saying, “We’ve gone as far as we can with traditional
research. Now we have technology in our pockets that
lets us go further” [77] . 23andMe’s CEO Anne Wojcicki
has declared that, “We can do things much faster and
more efficiently than any other research means in the
world”  [70] . And according to Dr Robert Califf, a col-
laborator on the Baseline Study who now heads the
FDA, Google has “obviously got the computing power
to do things on a bigger scale than other people” [78] .
www.futuremedicine.com 10.2217/pme-2016-0057
Perspective  Sharon
These companies thus transpire as the natural
partners with whom research institutes should col-
laborate, not just on specific projects like a clinical
study or a cancer cloud commons, but in what is
conceived as a new mode of science. For many com-
mentators, new possibilities for collecting and mining
large datasets, and for detecting patterns and build-
ing predictive models based on these, signal a new
era of knowledge production; a new epistemologi-
cal approach, characterized by the ability to obtain
meaningful insights based on correlations that are
‘born from the data’ rather than ‘born from the the-
ory’  [79] . Such claims to ‘the end of theory’ [80] have
been strongly criticized by both life scientists and
social scientists [81–83] who argue that a new kind of
‘data fundamentalism’ [42] that often accompanies big
data approaches is misleading and dangerous. Data
and datasets, these authors argue, are neither neutral
nor objective. Rather, they involve biases at various
levels: they are not generated free from theory and
questions that direct what one is looking for, just as a
significant amount of interpretive work is required for
drawing inferences from them. In this sense, there is
no such thing as ‘raw data’ [84] , data is always ‘cooked’
in the process of its collection and use.
We are certainly in the midst of a ‘hyping of big
data’ that requires some dampening. Even so, in many
consequential policy documents [85,86] data-driven
medicine and research is being hailed as the next fron-
tier in which breakthroughs are expected in relation to
the development of personalized and precision medi-
cine, and these companies are marketing themselves as
facilitators of its realization. Big data, write boyd and
Crawford, “is less about data that is big than it is about
Table 1. Key epistemological and ethical issues by type of platform.
Concern
  Data collection
Data quality Apple ResearchKit
Google Baseline
Representativeness Apple ResearchKit
Google Baseline
23andMe
Privacy/context Apple ResearchKit
transgression Google Baseline
23andMe
Informed consent Apple ResearchKit
Google Baseline
23andMe
Openness/gatekeeping 23andMe
Google Baseline
Shift in expertise All examples
10.2217/pme-2016-0057 Per. Med. (Epub ahead of print)
a capacity to search, aggregate, and cross-reference
large datasets” [40] . It is this capacity and the techno-
logical means that engender it that these companies
brandish as their expertise, and that is traditionally
very expensive for academics to get access to. This may
beg the question of who the experts in this new kind
of data-intensive, mobile technology-enabled science
will be in the future. If the announcement on Duke’s
website of its collaboration with Google on the Base-
line Study [87] is anything to go by, where one reads
that Duke and Stanford are to ‘assist Google’ – not
the other way around – this question deserves critical
attention.
Collaborations between academia and industry
and the commercialization of science are certainly
not new. Nor is public benefit only to be achieved via
the public sector. It remains to be seen how and to
what extent the partnerships currently being struck
between public research institutes and these com-
panies differ from what we already know, and how
various public and private interests are managed and
disclosed to participants. On the face of it though,
some important and telling differences between these
companies and big pharma, for example, are evident.
Pharmaceutical companies have long been partners in
academic research, just as they often act as gatekeep-
ers to specific types of data generated in studies they
run. But these are a limited type of data; they typi-
cally lack the wealth of longitudinal data about study
participants that large tech companies have access to,
as well as the analytics capacities to turn that informa-
tion into predictions [29] . Pharmaceutical companies,
moreover, have a relatively straightforward business
model. It is less clear, in a number of the examples dis-
Technological affordance
Data storage Data analysis
Apple HealthKit  
Google Fit
   
Google genomics Google DeepMind
Amazon cloud Google Baseline
Apple HealthKit
Google Fit
Google genomics Google DeepMind
Amazon cloud Google Baseline
Google genomics Google DeepMind
Amazon cloud Google Baseline
All examples All examples
future science group
 The Googlization of health research: from disruptive innovation to disruptive ethics  Perspective

cussed here, what financial gains these companies can
expect and how they will be reaped. For example, is
Apple’s interest in developing the ResearchKit simply
increased sales of iPhones? More realistically, entrance
into the domain of health research secures companies
access to a lucrative health market, with the prom-
ise of spin-offs down the line that will capitalize on
newfound needs for health data generation and analy-
sis. Google DeepMind, for example, is not currently
charging the NHS for the work it is doing, but it most
likely will once its algorithms become indispensable.
As DeepMind co-founder, Mustafa Suleyman has
stated, “Right now it is about building the tools and
systems that are useful and once users are engaged
then we can figure out how to monetize them” [88] .
Last, unlike pharmaceutical companies, the activities
of these companies are not restricted to one domain.
Indeed, it is precisely their expansion into and grow-
ing dominance over very different fields, from com-
munications and advertising, to books, transport,
finances, health, and others – a development that has
been enabled by the increasing digitization or datafi-
cation of these realms – that can affect the balance of
political and economic powers.
Conclusion & future perspective
There are immense benefits to be reaped for health and
medical research by the introduction of new methods
for collecting, storing and analyzing personal health
data enabled by consumer-oriented mobile technolo-
gies and internet-based services. But these are accompa-
nied by important ethical challenges. Some of these are
inherent to contemporary forms of research using large
digital datasets and mobile-enabled data collection,
such as questions of data quality, representativeness
and generalizability, privacy protection and informed
consent. But others are more specific to the develop-
ments described here, as facilitated or undertaken by
large technology companies. These include first the
potential for privacy violations resulting from ‘context
transgressions’ [53] when data donated for research pur-
poses are (re)used for commercial gains, which may
result in trust gaps and a public backlash against par-
ticipation in research. And second, the emergence of
new digital divides based on access to and control over
important databases, technological infrastructures and
forms of expertise [40] , that could lead to new power
imbalances with wide-ranging effects on research
agendas. Table 1 offers an overview of these issues,

Executive summary
Background
• Consumer-oriented mobile technologies that offer new methods for collecting, storing and sometimes
analyzing health data are increasingly seen as facilitators of biomedical research.
• This has opened the way for large consumer tech companies to enter the space of medical research, and raises
a number of ethical issues.
Tools to revolutionize medical studies?
• New initiatives including the Apple ResearchKit, Google Genomics cloud service and Google Baseline Study
seek to overcome limitations in traditional research, including novel methods for recruiting study participants,
collecting data, storing large datasets and analyzing them.
Quality of research
• There are concerns about the quality of data generated by these platforms.
• There is a potential for population bias: the population of users of these technologies often skews toward
more white, affluent and well-educated groups.
• Despite the assumption that the size of these datasets will neutralize biases, there are possible discriminatory
effects in this type of research. This is not just an epistemological issue, but a question of social justice.
Privacy, anonymization & informed consent
• The tension between linking datasets and the impossibility of guaranteeing anonymity is exacerbated in this
context by concerns of ‘corporate tracking’ and unclear privacy regulations for consumer devices.
• There is a looming threat of ‘context transgression’, between the contexts of research (and notions of the
common good associated with it) and commercial profit, which can lead to a ‘trust gap’.
New power asymmetries
• The expansion of private health datasets may draw new digital divides based on access. This contrasts with
ideals of ‘open science’ and a ‘data commons’.
• Control over new technological infrastructures and new forms of computational expertise offered by these
companies will further contribute to these digital divides.
Conclusion
• Though part of a broader phenomenon of data-intensive health research, there are ethical issues that are
specific to the Googlization of health research.
• These are the potential for privacy violations resulting from ‘context transgressions’ and the emergence of
new digital divides that can affect future research agendas.

future science group www.futuremedicine.com 10.2217/pme-2016-0057

Perspective  Sharon
though in reality they are more overlapping than the
table allows for).
These developments are underpinned by a num-
ber of tensions between discursive appeals to values
and possible new realities, which remain unresolved.
These include the perceived objectivity of big data
versus its discriminatory effects, public versus private
interests, open science versus proprietary data sources
and participatory science versus new concentrations
of power. These tensions were touched upon briefly
here, but need to be explored further, both theoreti-
cally and empirically, and point to the intertwining of
epistemological and sociopolitical issues that is at the
heart of this new phenomenon. This is not to say that
the Googlization of all health research will transpire,
as some of the obstacles described here indicate, but
that these issues should be carefully monitored, and
that more work needs to be done to secure ethical
governance of this emerging research ecosystem.
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The author wishes to thank members of the Data & IT in
Health & Medicine Lab, in particular B Prainsack, L Del Savio,
F Lucivero, N Purtova, R Smith and M Turrini, for insightful
discussions in the preparation of this article. The author also
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Financial & competing interests disclosures
Support for preparation of this article was provided by The
Netherlands Organization for Scientific Research (NWO), Grant
No. 275-20-050, and the Edmond Hustinx Foundation. The au-
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www.dtmi.duke.edu/news/duke-and-stanford
88 Why Google DeepMind wants your medical records.
BBC News.
www.bbc.com/news/technology-36783521
future science group