Case Study: An Ethics Case Study of HIV Prevention Research on Facebook: The Just/Us Study

"Using social media for research may allow researchers to readily access and engage network members; and requires utilization of rapidly evolving technical mechanisms to ensure confidentiality. It also requires utilization of new strategies to ensure that consent is truly informed. "

This research examines the use of internet-based social media use in research and the research requirement of informed consent. "In this article, we will describe an ethics case study of using Facebook to deliver a sexual education program to youth and young adults, with a focus on those issues... which include a description of potential ethical risks related to beneficence, information and comprehension, equity and special populations, and confidentiality and security." [Footnotes are removed throughout by the editor.]

This research describes the "Just/Us" Facebook site study: "The study has enrolled 1,588 youth in a randomized controlled trial, and we plan to compare any change in attitudes towards, norms for, and implementation of healthy sexual behavior among those randomly assigned to access the Just/Us Facebook page compared to those randomly assigned to access a comparison Facebook page offering news and current events, called 18-24 News....Youth are contacted in three ways - in community settings where staff sit at a table with a banner advertising the study and youth approach for more information (e.g., at community events such as festivals and fairs, on community college campuses, 4-year college campuses, and in community-based organizations serving high-risk youth), through college newspaper advertisements in local city newspapers in geographic areas where youth experience higher than average rates of sexually transmitted infection (STI) including HIV; and through personal networks of study staff, who send out advertisements via e-mail. Youth who approach staff or respond to an ad are screened for eligibility using a script (aged 16-25 years; able to speak and write English; have a Facebook page; live in the United States) and invited to join the study. They complete an informed consent by reading through it online; frequently asked questions (FAQs) about the study and consent process are posted on the Facebook page."

The Just/Us researchers trained staff on confidentiality. After completing a baseline sexual health assessment online, volunteer are assigned one or the other website and required to "like" the site in order to participate. They are asked to recruit Facebook friends to participate. After 8 weeks and at endline (6 months), they complete another assessment, receiving monetary gift cards for each assessment.

The analysis brings researchers to the following points:

• "Make sure the use of social media is justified. Is this a place where you will reach more people than you otherwise would in a face-to-face or traditional Internet or mobile phone program? Are there members of your target audience in substantial numbers on a given social media site and are you likely able to interact with them there in a meaningful and engaged way?
•  Make sure you consider information and comprehension in every aspect of your program from informed consent to study procedures, to program elements. Make informed consent documents available in a number of different formats, including video, so people have multiple options from which to choose to get this critical information. It is also possible to discuss key consent topics when talking with participants prior to enrollment. While we did NOT employ this approach, instead asking them to read materials we directed them to online, having at least a brief verbal consent could increase the likelihood that young people will be exposed to consent information.
• Make sure you work to protect confidentiality. If you have criteria for enrollment that would compromise confidentiality, consider making your intervention one that is by invitation only, where people will have to leave their own page to participate in your organization’s private group. When collecting any data on participants, do so outside the social networking site entirely, and make sure you house data on a secure server with firewall protection."