Health-related research is increasingly drawing on novel sources of online data, such as crowdsourced information about disease outbreaks, consumer-supplied information provided to health or wellness Web sites, Internet search queries about personal health, and social network postings that identify health behaviors.

We offer examples of online sources and their uses, identify ethical and policy issues they generate, and formulate key questions for future discussion and investigation.

Further work in this area will require cross-disciplinary collaboration to develop ethics and policy guidance for the ethical use of these novel data sources in health-related research.

A DRAMATIC RECENT DEVELopment in health-related research, and public health research in particular, is the emergence in multiple forms of unprecedented uses of online health information. These uses include undertaking and improving infectious disease surveillance1; understanding patterns of chronic disease2; probing population genetics3; assessing health behavior4; and identifying and recruiting potential participants for clinical research.5 Some newer data collections rely on information voluntarily provided by individuals, which may then be used in research with or without their knowledge. There are also approaches that rely on “mining” data aggregated from individuals who are likely unaware that their information is being gathered or used for research purposes. Examples include data sets created from analysis of aggregate Internet search behaviors to identify illness trends (e.g., Google Trends, Google Insights for Search) and mining personal information from social networking sites to characterize health behaviors (e.g., Facebook, Myspace, LinkedIn). Data sets are also being created from Web sites that use both aggregate and individual user–provided health data, such as PatientsLikeMe.com. These public and private sources of health data, used separately or in combination, create new opportunities to address health issues and will be an increasingly valuable tool for a wide range of health-related research.

The trend toward innovative uses of online data for health-related research may well have started with the large amounts of genetic and genomic data collected worldwide in many separate research projects, some collaborating but others working in isolation. The data sets generated by researchers are increasingly recognized as an important resource for so-called secondary research purposes—that is, research purposes beyond those proposed when the information was collected. Sophisticated bioinformatics tools allow for increasingly larger and easier storage and combination of data sets for future analysis,6 including the linkage of data to electronic medical records and other sources of health information. Utilizing the growing amounts of information in such data sets is likely to aid health-related research as well as delivery of care in new and important ways. For example, studies have demonstrated such potential in genomics and pharmacogenomics research,3,7,8 and the US National Institutes of Health Multiplex Initiative currently under way is researching how to most effectively integrate the results of a panel of 15 genetic tests (i.e., a multiplex) with the health care delivered to large populations of patients who are members of integrated health care systems.9

Increased use of, and access to, the Internet is making both the collection of online information and access to it significantly easier, with both positive and negative implications. Individuals may search the Web for health-related information, may post their personal health status and behaviors via Facebook, or may report on disease outbreaks or other individual or public health-related aspects of local environments via crowdsourcing sites. Such information can be available to those engaging in public health surveillance as well as health-related research.10–13

User-supplied information for research raises questions of data quality and accuracy, but also raises issues regarding the terms under which such information can be used in research. It is our hope that this issue-spotting paper will highlight the need for broader discussion and will help stimulate the future elaboration of principles to guide the development of policy and practice for the ethically acceptable sourcing and use of online data for a wide range of health-related research (see the box on the next page).

Glossary of Terms
Table
Table
Data mining: Application of statistical methods to diverse data sets, to collect data, to identify or clarify associations or relationships within the data, and to estimate the strength of associations or relationships14
Crowdsourcing: Open call to large number of people (crowds) to provide ideas, information, and solutions (i.e., Wikipedia)
Interoperability of health data sets: The ability of different health data systems to exchange information accurately and to use the information that has been exchanged15
Search volume patterns: Amount of searches that have been performed for the search term, relative to the total number of searches that have been performed in the search engine
Bioinformatics tools: Computational and information technology tools used in biology and medicine

Individuals are voluntarily sharing health and health-related information about themselves (e.g., behavior, nutrition, disease status and treatment, genomics data) on various Web sites. Although the self-reported nature of the information challenges the standard approach to research employing carefully controlled studies, approaches relying on “crowdsourcing”16,17 and other group-created collections of information are clearly at the leading edge of research. Some examples of sites and how data can or have been used for health research follow.

PatientsLikeMe.com is a Web site that invites individuals to share their health- and illness-related experiences as a way of creating user communities. The site states that the company’s business model rests on its ability to sell access to these data to pharmaceutical companies and others as a research resource.18 Data sets collected from users have also been used by the company’s own research teams. For example, PatientsLikeMe published an article proposing that self-reported data can successfully be mined to assess drug performance as well as potential off-label uses.19 In another example of research involvement by a user community, individuals with amyotrophic lateral sclerosis registered with PatientsLikeMe.com decided to take lithium to test its impact on symptom relief and disease progression. The site provided Web tools for data collection and a matching algorithm to identify controls. The study was published in Nature Biotechnology, and refuted the claim that lithium has an effect on disease progression. In addition to these findings, the authors argued that the site can help accelerate medical discovery in a range of other areas.20

Other sites encourage users to share their genetic information and other health-related information to enable community studies to take place. Genomera.com’s current ongoing studies include comparisons of dosages of vitamin supplements, sleep patterns, and other variables according to genetic variations.21 OpenSNP.com also provides a platform for users to upload their direct-to-consumer genetic test results, share them with others, and make them searchable by researchers.22 Direct-to-consumer genetic testing companies such as 23andMe offer genome-wide screening services directly to the public.23 Services include disease risk probability, carrier status, predicted responses to certain drugs, and ancestry information. Genome data are maintained for future scanning when new genetic associations are added to the testing panel. The company uses the site to recruit users into disease-specific research projects via its research arm, 23andWe. As a result, 23andMe claims a database of close to 100 000 genetic profiles, all of which could potentially be used for research. It has publicly declared that it is becoming a research company,24 and has already published a significant genomewide association report on Parkinson’s disease, which identified 2 new genetic associations (and replicated others).25

In a somewhat different example, individuals may intentionally share personal health information on the Web yet may be unaware of potential or actual research uses of their information because the primary use of the site is unrelated to research. Some sites that fall into this category are designed in part to provide tailored health feedback to users, but their business model is based on sharing the data they collect with commercial entities for research and other purposes. Although references to potential research uses of the collected information may be included in the terms of use or service agreements and privacy policies of such companies, in many cases the information tends to be nonspecific. It remains unclear whether consumers understand or are even aware that their supplied information can be used in research, whether for health-related surveillance, research, or commercial purposes. One typical site, RealAge.com, claims more than 10 million members whose user-supplied health information is collected for the purpose of creating personalized health newsletters and information for delivery to users. Individual information is also combined with various other data sets and shared with commercial entities, including pharmaceutical companies, for research and marketing purposes.26

Other research approaches rely on collecting and analyzing existing personal information on the Web to extract potentially useful health-related information, rather than relying on users to supply such information to specific health-related sites. These approaches may rely on health-related information posted or shared for nonresearch purposes (e.g., via social networking sites) or information that can be gleaned from basic user activities on the Web. Some of the sites that track activity and behavior on the Web collect data primarily for targeted advertisements. These data can also be used for research purposes. As will be discussed in more detail, public health data can potentially be derived without the direct knowledge of participants (e.g., whether from search queries on health conditions or from mining information posted to social networks).

A collaborative group from Google and the US Centers for Disease Control and Prevention (CDC) published a report in 2009 on their combined effort to use population data to better predict disease outbreaks.27 In a project called Google Flu Trends the team applied algorithms to specific search terms related to influenza and its symptoms, and was able to predict flu outbreak in the United States 2 weeks earlier than standard CDC modeling approaches. Subsequent analyses have examined the accuracy of this approach and its applications, but related approaches have been reported for predicting flu outbreaks as well as prevalence of other illnesses and diseases.1,28–30 Similarly, HealthMap31 monitors publicly available Internet resources (and crowdsourced information) to detect disease outbreaks and to provide surveillance for public health threats; and Google Insights searches volume patterns across location and time to determine, for example, disease incidence.12,32–35

Social networking sites including Facebook have created huge and growing virtual communities. Some of the information posted and shared by users relates to their health issues and health-related behaviors. Research drawing on such data may include reported risk behaviors for infectious diseases such as HIV or illegal behaviors such as domestic violence, child abuse, or use of illicit drugs. Mining these sites might also gauge the effectiveness and impact of health promotion and prevention efforts, such as public health campaigns targeting smokers, obesity, and substance abuse (see the box on this page).2,4

Table
Table
Google Insights: http://www.google.com/insights/searchFree Google analysis tool that shows volume of searches over time, specific regions, and includes forecast for future searches of the term
Google Trends: http://www.google.ch/trendsFree Google analysis tool that shows volume of searches for a term; also refers to a project within Google to use search terms as a way of predicting trends in the real world
23andme.com: http://www.23andme.comOnline direct-to-consumer personal genomics service provider; owns and maintains biobank and database used for pursuing genomewide association studies
Patientslikeme.com: http://www.patientslikeme.comSocial networking site for patients, where individuals voluntarily share information about their illness or disease symptoms, health behaviors, treatments, and the like; owner of the site sells access for research
Healthmap.com: http://www.healthmap.comReal-time surveillance of disease outbreak and public health threats that uses information provided by individuals “on the ground” reporting local conditions; a form of crowdsourcing for public health surveillance
Genomera: http://www.genomera.comWeb site that stores genetic profiles and other data uploaded by users, and supports the conduct of community health studies
openSNP: http://www.opensnp.orgWeb site that stores genetic profiles, which can be searched by users as well as researchers for studies

Debate concerning the use of individual health information in research has traditionally focused on balancing a variety of factors: informational privacy of individuals, the population-oriented goals of public health and biomedical research, the potential benefits to the individuals themselves, the central importance of individual consent in research, various aspects of “vulnerability” in potential research participants, and the community-level issues raised by research on groups. The descriptive account sketched previously of the types of available online sources that may be increasingly useful for health-related research and various approaches to research “participation” provide a springboard for addressing in a thoroughgoing fashion the ethics and policy questions generated by the use of these technology-driven and user-created data sources. We suggest research directions for addressing the ethics and policy issues raised by the research approaches previously discussed. With 2 key considerations in mind, namely protection of research participants and facilitation of high-quality and ethically acceptable research, we outline an agenda of ethics and policy issues that we believe should form the basis of further and future analysis.

The key safeguard for protection of research participants in the context of biomedical and public health research is informed consent. There are various interpretations of what “informed consent” means in the context of online data collection. For example, does reference to potential research uses of personal data in a Web site’s terms of service constitute acceptable consent? Do checkbox agreements on Web site logins that include permission to access users’ online information represent genuine and ethically acceptable informed consent? Are “opt-in/opt-out” models any better? Characterizing the content and implementation of informed consent in these novel contexts is essential for protecting participants and streamlining research review. Essential questions for examination include the following: (1) What criteria are important in determining whether and under what conditions consent is required (e.g., is consent required from participants whose existing online data can be used for research in aggregated and unidentified forms)?36 (2) Is the purpose of research (e.g., public health vs research for marketing, recruiting, or other business-related motives) a factor in determining the need for consent or the form it should take? (3) Is consent required when patients or consumers initiate the research project themselves (e.g., through crowdsourcing approaches such as the PatientsLikeMe.com lithium study)?

These novel sources and research applications also require assessment of risks to participant privacy and confidentiality. Despite legal protections and technologies that purport to ensure online data protection, the increasing interoperability of data systems creates risks of security breaches. Creating online systems that ensure data security and yet allow interactive functions remains an ongoing challenge. Increasing evidence points to the insufficient protection of online privacy because of both the development of informatics tools and the growth of online personal data, including data that are self-reported.37 Two themes in particular are worth exploring. (1) Has our notion of privacy, especially with reference to the online data world, changed, and, if so, how should these changes affect privacy policies and practices? (2) Do individuals who provide data online understand the issues related to data security and are they aware of the state of online privacy and the risks to it entailed by the online environment?

In conventional biomedical and public health research, research ethics committees bear the primary responsibility for ensuring that informed consent procedures and processes are adequate, that risks are minimized and balanced against intended benefits, that participant selection is equitable and vulnerable populations are adequately protected from risks of harm and exploitation, and that the benefits of research are equitably distributed. Among the questions in need of greatest attention is whether research uses of online health data are or should be subject to the various laws and policies regarding the ethical conduct of research on human participants. Confusion in this area has already generated a plea for clarification from the scientific community. PLoS Genetics published an editorial accompanying a research article by the 23andMe research group that had analyzed genetic data of its customers without review by an institutional review board or other ethics review committee. The editorial was a call for clarity and need for a standardized review approach.38 Thus, a key question is whether the current models of biomedical and public health research review are appropriate for health research involving online data sources, or is there a need for the creation of alternative and more appropriate review processes? Furthermore, do the studies that are participant-initiated or participant-driven require ethics review and, if so, what sort of oversight do they require?

Although there is widespread Internet access in the developed world, the digital divide remains a concern at the global level. Several countries report Internet usage percentages in single digits. Does health research based on such data have the inherent problem of bias and questionable generalizability? This is not merely a technical issue that can be overcome by study designs that reduce or eliminate bias or focus findings on specific populations. It is also an ethical issue because particular groups are likely to be deprived of potential research benefits. Based on the general belief that health research using online information will translate into better health policy or medical advances, lack of online information could exacerbate existing health inequities.39 Conversely, if data were to be collected from countries with good Internet access but poor track record of privacy and personal data protection, questions arise regarding how such online data can be appropriately used. Attempts at international harmonization of codes and principles will need to acknowledge or account for such issues.

Research outcomes may have commercial value and hence may raise an array of issues related to intellectual property and patenting. Although most of these issues will be addressed by existing laws, pressing moral questions also remain. To collect large data sets, many organizations appeal to participants’ altruism and sense of social responsibility. Other commercializable outcomes may result from the use of data provided by individuals who are unaware of their inclusion in research. In the case of outcomes that yield intellectual property, it is necessary to address the obligations researchers have to research participants. Laws related to data ownership and intellectual property also are implicated as the collected data and biological samples become assets of a company (e.g., How are those assets treated when a company files for bankruptcy?). And, importantly, the blurring of national and state boundaries in relation to Web-based activities and companies raises jurisdictional issues that must be resolved.

The law will be a vital factor in formulating appropriate policies and ensuring the success of efforts to use online sources in an ethical manner. As mentioned previously, the use of online health data in research implicates a wide range of privacy laws, such as those related to health information, Internet use, and data protection. Online sources and their applications will also challenge traditional legal protections for research participants’ rights and welfare, including those related to research oversight, participant recruitment, informed consent, and risks to participants related to potential identifiability and publication.

If forecasts are correct and medicine is increasingly characterized by the “P4 approach”—preventive, participatory, predictive, personalized—we can expect the amount of such electronic health information to grow exponentially.40 This will be coupled with growing interest by consumers and patients in having access to their health data and in being in control of its potential uses, including research.41,42 In response to these developments, it is necessary to adopt a proactive approach to the important ethics and policy issues that have not yet received adequate attention. Focus on these issues is especially timely in the United States, as regulations concerning protection of human participants are slated for revision for the first time in decades. The proposed changes include new and strengthened data protection and informational risk protection provisions as well as approaches to addressing the fact that previously deidentified data (and all DNA specimens and sequences) can increasingly be linked to identified individuals through sophisticated information technologies. The proposal also includes strengthened requirements for consent in research involving any biospecimens (on the grounds that all are identifiable) as well as consent requirements for any current or future research use of collected information, identifiable or not.43 US President Barack Obama recently proposed a Consumer Privacy Bill of Rights for online data designed to provide consumers with control of online data uses and increased data protection.

How these proposed changes to the regulations for the protection of human participants and to online data privacy protections44 will affect research uses of online health-related information remains to be seen. Under any scenario, researchers will need to pay closer attention to consent as well as to data privacy and protection. Similarly, the recently proposed revision to the European Union data privacy regime will likely affect the handling and protection of many categories of digital information, including health-related information used in research.45 Policy changes in Europe and the United States are hardly independent from each other because online information does not reside within geographical borders and both policymakers and analysts have suggested that the strongest governmental policies will probably dictate behavior the world over.

The unprecedented availability of online information creates challenges that must be addressed so that valuable health-related research can be undertaken in ethically appropriate and legally sound ways, all within a clear, overarching policy framework. Achieving these multiple goals requires focused examination of the issues outlined here, by experts in research ethics and policy, privacy law, health informatics, public health, and pharmaceutical and biotechnology industries, as well as by representatives of consumer communities. There is currently no commonly accepted ethical and policy guidance when such health research is conducted. Deeper thinking on such issues will require that experts work across disciplines to integrate traditional research principles with a developing body of research and scholarship.46–48

The policy regime for health research is built on a foundation of trust in oversight and protections, to provide assurance that the benefits can be realized in ways that avoid risk to individuals and groups. The use of online information for health-related research holds out the prospect of a new paradigm of research that may also necessitate a new paradigm in research protections. Now is the time to address these issues because ignoring them can eventually lead to the undermining of the public’s very trust on which the research enterprise is based.

Acknowledgments

We would like to thank the anonymous reviewers and the American Journal of Public Health editor for their insightful comments.

Human Participant Protection

Human participant protection was not needed because research and analysis reflected in this article are based on literature reviews.

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Effy Vayena, PhD, Anna Mastroianni, JD, MPH, and Jeffrey Kahn, PhD, MPHEffy Vayena is with the Institute of Biomedical Ethics, University of Zürich, Zürich, Switzerland. Anna Mastroianni is with the School of Law and Institute for Public Health Genetics, University of Washington, Seattle. Jeffrey Kahn is with the Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD. “Ethical Issues in Health Research With Novel Online Sources”, American Journal of Public Health 102, no. 12 (December 1, 2012): pp. 2225-2230.

https://doi.org/10.2105/AJPH.2012.300813

PMID: 23078484