As with any form of research, the population or participants is selected for specific purposes i. Further, selection of participants must be fair, and risks and benefits must be justly distributed. This concept is challenging to apply in Internet contexts, in which populations are often self-selected and can be exclusive, depending on membership and access status, as well as the common disparities of online access based on economic and social variables.
Moreover, basic ethical principles for approaching and recruiting participants involve protecting their privacy and confidentiality. Internet research can both maximize these protections, as an individual may never be known beyond a screen name or avatar existence; or, conversely, the use of IP addresses, placement of cookies, availability and access to more information than necessary for the research purposes, may minimize the protections of privacy and confidentiality.
Much recruitment is taking place via social media; examples include push technologies, a synchronous approach in which a text or tweet is sent from a researcher to potential participants. Geolocational status through mobile devices and push technology recruitment, in tandem, allow for novel forms of recruitment for such research as in clinical trials. Regardless of the means used, researchers must follow the terms of the site—from the specific norms and nuances governing a site or locale to the legal issues in terms of service agreements.
For example, early pro-anorexia web sites see Overbeke were often treated as sensitive spaces deserving spcicial consideration, and researchers were asked to respect the privacy of the participants and not engage in research Walstrom In the gaming context, Reynolds and de Zwart ask:. How does the research project impact upon the community and general game play? Is the research project permitted under the Terms of Service? Seek permission from Web site owners and group moderators before posting recruitment announcements, Then, preface the recruitment announcement with a statement that delineates the permission that has been granted, including the contact person and date received.
Identify a concluding date deadline for the research study and make every effort to remove recruitment postings, which often become embedded within Web site postings. It is critical, therefore, to form partnerships with online community moderators by not only asking their permission to post the request, but eliciting their feedback and support as well.
Mendelson and Smith and Leigh note that recruitment notices need to contain more than the typical flyers or advertisements used for newspaper advertisements. Mentioning the approval of moderators is important for establishing authenticity, and so is providing detailed information about the study and how to contact both the researchers and the appropriate research ethics board.
The Council of American Survey Research warns. Research Organizations should take steps to limit the number of survey invitations sent to targeted respondents by email solicitations or other methods over the Internet so as to avoid harassment and response bias caused by the repeated recruitment and participation by a given pool or panel of data subjects.
Ultimately, researchers using Internet recruitment measures must ensure that potential participants are getting enough information in both the recruitment materials and any subsequent consent documents.
Researchers must ensure that recruitment methods do not lead to an individual being identified, and if such identification is possible, are there significant risks involved? As the cornerstone of human subjects protections, informed consent means that participants are voluntarily participating in the research with adequate knowledge of relevant risks and benefits. Providing informed consent typically includes the researcher explaining the purpose of the research, the methods being used, the possible outcomes of the research, as well as associated risks or harms that the participants might face.
The process involves providing the recipient clear and understandable explanations of these issues in a concise way, providing sufficient opportunity to consider them and enquire about any aspect of the research prior to granting consent, and ensuring the subject has not been coerced into participating. Gaining consent in traditional research is typically done verbally, either in a face-to-face meeting where the researcher reviews the document, through telephone scripts, through mailed documents, fax, or video, and can be obtained with the assistance of an advocate in the case of vulnerable populations.
The emergence of the Internet as both a tool and a venue for research has introduced challenges to this traditional approach to informed consent. In most regulatory frameworks, there are instances when informed consent might be waived, or the standard processes of obtaining informed consent might be modified, if approved by a research ethics board.
Some standards have emerged, depending on venue i. For example, a researcher may send an email to the participant with a link a separate portal or site information page where information on the project is contained. Hudson and Bruckman , highlighted the unique challenges in gaining consent in chat rooms, while Lawson offers an array of consent possibilities for synchronous computer-mediated communication.
There are different practical challenges in the consent process in Internet research, given the fluidity and temporal nature of Internet spaces.
If documentation of consent is required, some researchers have utilized alternatives such as electronic signatures, which can range from a simple electronic check box to acknowledge acceptance of the terms to more robust means of validation using encrypted digital signatures, although the validity of electronic signatures vary by jurisdiction.
Regardless of venue, informed consent documents are undergoing a discursive change. While the basic elements of consent remain intact, researchers must now acknowledge with less certainty specific aspects of their data longevity, risks to privacy, confidentiality and anonymity see Privacy, above , and access to or ownership of data.
Statements should be revised to reflect such realities as cloud storage see below and data sharing. For example, Aycock et al. This use of encryption in the last statement may be necessary in research including sensitive data, such as medical, sexual, health, financial, and so on. Barratt and Lenton , in their research on illicit drug use and online forum behaviors, also provide guidance about use of secure transmission and encryption as part of the consent process.
In addition to informing participants about potential risks and employing technological protections, U. However, these do not protect against release of data outside of the U. Given the reality of Internet research itself, which inherently spans borders, new models may be in order to ensure confidentiality of data and protections of data. Models of informed consent for traditional international research are fundamentally challenging due to cultural specificity and norms Annas ; Boga et al.
In addition, as more federal agencies and funding bodies across the globe mandate making research data publicly-available i. This is not an entirely new concept nor is it specific to Internet research, but it should be noted that new language is required for consent.
Current data sharing mandates must be considered in the consent process. Alignment between a data sharing policy and an informed consent document is imperative.
Both should include provisions for appropriate protection of privacy, confidentiality, security, and intellectual property.
There is general agreement in the U. Data use or data restriction agreements are commonly used and set the parameters of use for researchers.
Restricting access to data should never be seen as the only way to protect confidentiality. Obtaining appropriate informed consent and anonymising data enable most data to be shared:. For confidential data, the Archive, in discussion with the data owner, may impose additional access regulations, which can be:. Data sharing made public headlines in when a Danish researcher released a data set comprised of scraped data from nearly 70, users of the OkCupid online dating site.
The researcher claimed the data were public and thus, such sharing and use was unproblematic. Zimmer was among many privacy and ethics scholars who critiqued this stance. The Danish researchers did not seek any form of consent or debriefing on the collection and use of the data, nor did they have any ethics oversight. Many researchers and ethics boards are, however, starting to mitigate many of these ethical concerns by including blanket statements in their consent processes, indicating such precautions for research participants.
Despite these possibilities, I consent to participate. A more specific example comes from the Canadian context when researchers propose to use specific online survey tools hosted in the United States; REBs commonly recommend the following type language for use in informed consent documents:. Please note that the online survey is hosted by Company ABC which is a web survey company located in the U.
Age of consent varies across countries, states, communities, and locales of all sorts. For research conducted or supported by U. Goldfarb provides an exhaustive discussion of age of majority across the U.
Spriggs, from the Australian context, notes that while no formal guidance exists on Internet research and minors under the National Statement , she advises:. To assist with the consent process, age verification measures can be used.
These can range from more technical software applications to less formal knowledge checks embedded in an information sheet or consent document. Multiple confirmation points asking for age, later asking for year of birth, etc are practical measures for researchers. Recent developments in cloud computing platforms have led to unique opportunities—and ethical challenges—for researchers. Cloud computing describes the deployment of computing resources via the Internet, providing on-demand, flexible, and scalable computing from remote locations.
Examples include web-based email and calendaring services provided by Google or Yahoo, online productivity platforms like Google Docs or Microsoft Office , online file storage and sharing platforms like Dropbox or Box. Alongside businesses and consumers, researchers have begun utilizing cloud computing platforms and services to assist in various tasks, including subject recruitment, data collection and storage, large-scale data processing, as well as communication and collaboration Allan ; Chen et al.
As reliance on cloud computing increases among researchers, so do the ethical implications. Among the greatest concerns is ensuring data privacy and security with cloud-based services.
For researchers sharing datasets online for collaborative processing and analysis, steps must be taken to ensure only authorized personnel have access to the online data, but also that suitable encryption is used for data transfer and storage, and that the cloud service provider maintains sufficient security to prevent breaches.
Further, once research data is uploaded to a third-party cloud provider, attention must be paid to the terms of service for the contracted provider to determine what level of access to the data, if any, might be allowed to advertisers, law enforcement, or other external agents. Alongside the privacy and security concerns, researchers also have an ethical duty of data stewardship which is further complicated when research data is placed in the cloud for storage or processing.
Cloud providers might utilize data centers spread across the globe, meaning research data might be located outside the United States, and its legal jurisdictions. Terms of service might grant cloud providers a license to access and use research data for purposes not initially intended or approved of by the subjects involved.
Stewardship may require the prompt and complete destruction of research data, a measure complicated if a cloud provider has distributed and backed-up the data across multiple locations. A more unique application of cloud computing for research involves the crowdsourcing of data analysis and processing functions, that is, leveraging the thousands of users of various online products and services to complete research related tasks remotely. Using cloud-based platforms can raise various critical ethical and methodological issues.
First, new concerns over data privacy and security emerge when research tasks are widely distributed across a global network of users. Second, crowdsourcing presents ethical concerns over trust and validity of the research process itself. Thus, researchers will need to create additional means of verifying data results to confirm tasks are completed properly and correctly. Two additional ethical concerns with crowdsourcing involve labor management and authorship.
Turks were not originally intended to be research subjects, first and foremost. However, researchers using Mechanical Turks must ensure that the laborers on the other end of the cloud-based relationship are not being exploited, that they are legally eligible to be working for hire, and that the incentives provided are real, meaningful, and appropriate Scholz ; Williams , Other Internet Resources.
Finally, at the end of a successful research project utilizing crowdsourcing, a researcher may be confronted with the ethical challenge of how to properly acknowledge the contributions made by typically anonymous laborers. Ethical research requires the fair and accurate description of authorship. Disciplines vary as to how to report relative contributions made by collaborators and research assistants, and this dilemma increases when crowdsourcing is used to assist with the research project.
Algorithmic processing is a corollary of big data research, and newfound ethical considerations have emerged. Specifically, the National Science and Technology Council note:.
While the concept of big data is not new, and the term has been in technical discourses since the s, the public awareness and response to big data research is much more recent.
Subject privacy, for example, is typically protected within the context of research ethics through a combination of various tactics and practices, including engaging in data collection under controlled or anonymous environments, limiting the personal information gathered, scrubbing data to remove or obscure personally identifiable information, and using access restrictions and related data security methods to prevent unauthorized access and use of the research data itself.
The nature and understanding of privacy become muddled, however, in the context of big data research, and as a result, ensuring it is respected and protected in this new domain becomes challenging.
As a result, big data researchers might conclude subjects are not deserving of particular privacy consideration. This uncertainty in the intent and expectations of users of social media and internet-based platforms — often fueled by the design of the platforms themselves — create numerous conceptual muddles in our ability to properly alleviate potential privacy concerns in big data research.
The conceptual gaps that exist regarding privacy and the definition of personally identifiable information in the context of big data research inevitably lead to similar gaps regarding when informed consent is necessary.
Researchers mining Facebook profile information or public Twitter streams, for example, typically argue that no specific consent is necessary due to the fact the information was publicly available. It remains unknown whether users truly understood the technical conditions under which they made information visible on these social media platforms or if they foresaw their data being harvested for research purposes, rather than just appearing onscreen for fleeting glimpses by their friends and followers.
The Facebook emotional contagion experiment, discussed above, is just one example in a larger trend of big data research conducted outside of traditional university-based research ethics oversight mechanisms. Nearly all online companies and platforms analyze data and test theories that often rely on data from individual users. It implies pervasive testing of products and services that are an integral part of intimate daily life, ranging from connected home products to social networks to smart cars.
Except in cases where they are partnering with academic institutions, companies typically do not put internal research activities through a formal ethical review process, since results are typically never shared publicly and the perceived impact on users is minimal. When organizations process personal data outside of their original context, individuals may in some cases greatly benefit, but in other cases may be surprised, outraged, or even harmed.
Soliciting consent from affected individuals can be impractical: Moreover, by definition, some non-contextual uses — including the retention of data for longer than envisaged for purposes of a newly emergent use — may be unforeseen at the time of collection.
While such efforts are important and laudable, they remain open for improvement. While many researchers and review boards across the world work without formal guidance, many REBs have developed guidelines for Internet research. While many such guidelines exist, the following provide examples for researchers preparing for an REB review, or for boards developing their own policies. Human Subjects Research 3.
Key Ethical Issues in Internet Research 4. Research studying information that is already available on or via the Internet without direct interaction with human subjects harvesting, mining, profiling, scraping, observation or recording of otherwise-existing data sets, chat room interactions, blogs, social media postings, etc. Research that uses the Internet as a vehicle for recruiting or interacting, directly or indirectly, with subjects Self-testing websites, survey tools, Amazon Mechanical Turk, etc.
Research about the Internet itself and its effects use patterns or effects of social media, search engines, email, etc. Research about Internet users: Human subject means a living individual about whom an investigator whether professional or student conducting research obtains data through intervention or interaction with the individual, or identifiable private information. Carpenter and Dittrich encourage Review boards [to] transition from an informed consent driven review to a risk analysis review that addresses potential harms stemming from research in which a researcher does not directly interact with the at-risk individuals….
With careful attention to risk and benefit to Internet subjects, King offered a cautionary note: King , The issue of Information Society dedicated to Internet research is considered a watershed moment, and included much seminal research, still of impact and relevance today Allen ; Boehlefeld ; Reid The workshop acknowledged The vast amount of social and behavioral information potentially available on the Internet has made it a prime target for researchers wishing to study the dynamics of human interactions and their consequences in this virtual medium.
There were three driving forces behind the inception of this journal, and Eysenbach calls attention to the growing social and interpersonal aspects of the Internet: Another example of disciplinary differences comes from the Oral History Association, which acknowledged the growing use of the Internet as a site for research: For example, when discussing the possible exemption of certain research from human subject review, federal guidelines require oversight in these circumstances: In the gaming context, Reynolds and de Zwart ask: Colvin and Lanigan , 38 suggest researchers Seek permission from Web site owners and group moderators before posting recruitment announcements, Then, preface the recruitment announcement with a statement that delineates the permission that has been granted, including the contact person and date received.
Barratt and Lenton , among others, agree: The Council of American Survey Research warns Research Organizations should take steps to limit the number of survey invitations sent to targeted respondents by email solicitations or other methods over the Internet so as to avoid harassment and response bias caused by the repeated recruitment and participation by a given pool or panel of data subjects.
The key [linking] subject names and these study identifiers will be kept in a locked file. Data Archive provides guidance on consent and data sharing: Obtaining appropriate informed consent and anonymising data enable most data to be shared: For confidential data, the Archive, in discussion with the data owner, may impose additional access regulations, which can be: Spriggs, from the Australian context, notes that while no formal guidance exists on Internet research and minors under the National Statement , she advises: Parental consent may be needed when information is potentially identifiable.
Identifiable information makes risks to individuals higher and may mean that the safety net of parental consent is preferable. There is also a need to consider whether seeking parental consent would make things worse e. Spriggs , 30 To assist with the consent process, age verification measures can be used. Specifically, the National Science and Technology Council note: Research Ethics Boards Guidelines While many researchers and review boards across the world work without formal guidance, many REBs have developed guidelines for Internet research.
Technologies, Methodologies, and Ethical Issues , H. Barbaro, Michael and Tom Zeller Jr. Childress, , Principles of Biomedical Ethics , Oxford: University of Oslo, pp.
Issues and Controversies , Hershey: Readings and Commentary , Johns Hopkins Press. Irvine Law Review , 2: American Association for the Advancement of Science. Burns, , On Moral Grounds: But is It Ethical? Cappelen Damm Jackman, M. Methods, Issues, and Ethics , New York: Fernwood Publishing Kramer, A. Issues and Controversies , E. Once I have your completed Research Request Document, I carefully sift through the millions of pages on the Internet that reference your topic gathering all the information, facts and figures you need to add proof and credibility to your copy.
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