Young adults almost universally access and use social media sites that facilitate Internet-based communication, and they comprise diverse socioeconomic and racial communities (Lenhart, Purcell, Smith, & Zickuhr, 2010
). The Internet in general, and social media sites such as Facebook and My Space in particular, offer potentially unprecedented access to millions of young people—to collect data, to interact with youth about health promotion messages, or simply to share and disseminate health information. With this potential comes unique ethical challenges. 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.
The structure of social media allows for interaction among youth who are users of these sites, ranging from close friends to total strangers. Individuals can set up a profile on a social media site and then invite their regular (offline) friends and others to communicate online. Sites allow users to limit access to selected “friends.” Once an individual allows a new “friend” into their online social network, these friends have access to the details that the user posts on their profile, and can access information on who else is in an individual’s online social network. In order for other people, including researchers, to see information beyond an individual user’s name and profile photo, they need to obtain permission from the user; this is frequently done by sending an invitation for an individual to become your “friend”; a person either accepts such an invitation or declines it. If others want to connect with someone in the user’s social network, they need to obtain permission directly from that person. Reconnecting with real world friends’ online and making virtual friends is similar to meeting friends in a mall or a park. However, the online world erases geographic boundaries, and removes certain social cues and visual information found in face to face encounters. It may allow for a greatly expanded social network; it may also allow persons who should not be in a network to gain entrée. This could happen if an individual does not maintain vigilance over who they accept as a “friend,” and who therefore is allowed access to personal profile information. We know little about what type, if any, stress this exposure to personal profiles would incur on social media users.
Social media sites also allow for a less intimate communication between individuals and groups or organizations. Youth can “like” (i.e., join) a group or become a fan of a group—say a band, a celebrity or a cause. Once a person “likes” this group, others who they have “friended” in their social network can see that they “like” this group. However, other members of this group will only see that there is a new group “fan.” They will not gain access to the new fan’s social network. Social media sites also allow youth and adults to search for others online, and to retrieve basic information about individuals from such a search. For example, if a person was interested in identifying female graduates of the class of 2008 of Washington High School, Anytown, USA who had a user profile on a site, they could do so, assuming these women indicated in their profile that they graduated from this high school. Each social media site has different privacy settings, where users can decide who can see what information about them. However, the default setting is usually public, and many users rely on the default rather than restricting access. In addition, the privacy options rapidly change, as supposed enhancements to individual’s privacy.
This brief description raises a number of issues to consider for researchers who want to conduct research ethically using social media. 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 highlighted in , which include a description of potential ethical risks related to beneficence, information and comprehension, equity and special populations, and confidentiality and security.
Ethical Principles and how they may be Considered on a Social Networking Site
We are attempting to reach youth at highest risk for Human Immunodeficiency Virus (HIV) in the United States, including African American and Latino youth. These populations are not consistently engaged in HIV prevention research (Jemmott, III, Jemmott, Braverman, & Fong, 2005
; Essien, Meshack, Peters, Ogungbade, & Osemene, 2005
; Galvan, Davis, Banks, & Bing, 2008
) and our recruitment efforts in the Just/Us study on Facebook are in part to remediate this deficit. Although our focus is on sexuality and sexual health education, we recognize that growing interest in using computers, the Internet and mobile phones for chronic disease management, promotion of healthy eating and physical activity, smoking and drinking interventions suggests this information could be relevant for numerous topics in health promotion (Rodgers et al., 2005
; Brendryen & Kraft, 2008
; Crutzen et al., 2008
; de, Veling, Ton, De, & de Vries, 2008
; Kim & Kim, 2008
; Webber, Tate, & Quintiliani, 2008
; Bennett & Glasgow, 2009
; Swendeman & Rotheram-Borus, 2010