Part 4 – Online Research and Consent

Concerns regarding online research

The Internet allows offers a wealth of information to researches with little work, yet in itself raises ethical concerns. A few of these will be touched here in brief.

It is important to remember that even online, human research can be conducted. By gathering information from or about human subjects in a scientific and methodical way, this classifies as human research. However, processes like informed consent and IRB review may be waived if the parameters of the study would normally be waived if they were offline. For instance, viewing and analyzing public information does not require review or consent, no more than observing public behavior would in offline research. However, concerns will arise in the “privacy online” section. In this situation, it is important to differentiate between using the Internet as a research tool (interventional study, as in using the internet to distribute a survey) and using the internet as an object of study (interactional study, merely monitoring or reviewing information online). This will guide research parameters to an extent.

 

Special considerations in an online setting

Online research poses difficulty in verifying the factuality of information respondents give about themselves. In certain MMORPG settings and online forums, a user’s “online persona” may be fictional and vastly different than their offline persona. Furthermore, considerations must be given to the age of subjects. Self-reported ages are difficult to verify and researchers may have no way of verifying if the respondent is indeed a minor, even when using age verification services or asking the subject to affirm their responses as true. Therefore, special consideration must be given to the content and parameters of the study in this setting.

 

Privacy online

It is important to note the distinction between what a subject perceives as private information and what is in actuality private information, when online. Though users may be sharing information to social media that they wish to remain private, they may not understand the privacy settings of their website or social media platform. In this case, ethically, the information must be considered private and obtained through consented means even if it is in actuality public. This may also apply to information that is leaked or information on websites that change their privacy settings.

Consideration must be given to research on websites that are not readily accessible online. For instance, if a website requires an account and for users to log in to review information, it is likely this information is considered private and requires consent.  Information collected through “data scraping,” which is the using of computer programs to populate and record information from large sites like social media platforms, must be considered through this lens as well.

 

Confidentiality online

In short, confidentiality in an online setting can never be definitively guaranteed. Information taken off the internet can be re-identified in ways that physically gathered information cannot. For instance, quotes pulled off personal websites can generally be easily traced by simple Internet searches and information on subjects can become identifiers if they are stored in similar places. An example would be recording a user’s height, area of residence, political views and age. While these may be non-direct identifiers in an offline setting, if their social media profile has this information, it can quickly become an identifier as few profiles would have all this information set to these values. Further, an IP Address is considered a direct identifier.

Special concern must be given to the identifying data collected during studies, especially when dealing with private information. Further, outside access to research data sets can compromise confidentiality. Uploading information to cloud storage websites can present a danger in confidentiality as the staff of the service website may be able to view information. Password protecting and encrypting files uploaded to the cloud are advisable means of protecting the confidentiality of data sets.

 

Consent in online settings

Despite being online, informed consent still applies to internet research. Digital signatures and embedded images of signatures are considered acceptable means of documenting consent for studies. Further, in studies that pose no more than minimal risk and do not deal with private information, documentation of consent may be waived by the IRB. If this is done, informed consent is still necessary: there must be a consent document that the subjects will review. A means of assuring review is to add a button with text to the effect of “by clicking this button to proceed you affirm you have reviewed the informed consent above.” In this way the participant actively affirms they understand the consent procedures.

It is important to include contact information on the online forms to assure the users can contact staff if they have any questions. It is also important to remember that participation must always be voluntary in a study. Therefore, it is necessary to assure that respondents can chose not to complete certain procedures ore questions and still be able to proceed and complete the study, and they are aware of this at all times.