Published online December 31, 2007
PEDIATRICS Vol. 121 No. 1 January 2008, pp. 157-161 (doi:10.1542/peds.2007-3015)

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SPECIAL ARTICLE

Research Ethics in the MySpace Era

Megan A. Moreno, MD, MSEd^a, Norman C. Fost, MD, MPH^b and Dimitri A. Christakis, MD, MPH^a,c

^a Department of Pediatrics, Section of Adolescent Medicine, University of Washington and Children's Hospital and Regional Medical Center, Seattle, Washington
^b Department of Pediatrics and Bioethics, University of Wisconsin, Madison, Wisconsin
^c Department of Pediatrics, University of Washington, Seattle Children's Hospital Research Institute, Seattle, Washington

	ABSTRACT

TOP ABSTRACT SEEKING A PROPER ANALOGY DOES RESEARCH ON SOCIAL... DOES RESEARCH ON SOCIAL... PROTECTING CONFIDENTIALITY DOES RESEARCH ON SOCIAL... INFORMED CONSENT FOR RESEARCH... CONCLUSIONS REFERENCES

 
Social networking web sites are popular among adolescents and may represent a new venue for conducting adolescent health research. Conducting research by using social networking web sites raises several concerns, including the social value of this research, fair subject selection, confidentiality, privacy, and informed consent. Addressing each of these concerns, we offer an ethical framework to promote informed and appropriate decisions.

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Key Words: social networking sites • ethics • Internet

Abbreviations: IRB—institutional review board

A relatively new trend in adolescent Internet communication is the use of social networking Web sites.¹ Examples include MySpace (www.myspace.com) and Facebook (www.facebook.com). It is well known that adolescents are avid Internet users; data have suggested that >90% of teens have access to the Internet at either school or home,² and most teens report daily use.³ Of these Internet-using adolescents, it has been estimated that 55% of American youth aged 12 to 17 use online social networking Web sites.⁴ MySpace, the most popular social networking Web site, currently boasts 38 million unique visitors, of whom 25% are minors.^5,6

Social networking Web sites allow any user to create a personal Web profile and network with others who have profiles on that Web site. Personal Web profiles can include personal pictures, home movies, journal entries, and lists of favorites (eg, hobbies, movies) in any combination chosen by the profile owner. Profiles may be displayed publicly (available to any Web site visitor regardless of whether they are a member of MySpace) or privately (available only with the profile owner's permission). Social networking on these Web sites can occur in several ways. Profile owners commonly establish a list of online "friends" whose profiles are featured as links on one's own profile. Profile owners can seek new acquaintances by browsing other profiles on the Web site. Web profiles also offer opportunities for visitors to publicly post comments on other members’ personal profiles. All e-mail communication goes directly from one profile to another; personal e-mail addresses are not used.

Anecdotal reports and studies have suggested that many profile owners display personal information about relationships, sexual behaviors, health risk behaviors such as substance use, and mental health concerns such as depression on their publicly available Web profiles.^7,8 For clinicians and researchers who are interested in studying or modifying risk behaviors in teens, social networking Web sites present a new universe both because of the sheer volume of adolescents who use them and because it is possible, at least in theory, to learn a great deal about teens by what they choose to display publicly.

There are several ways in which adolescent research could be conducted by using social networking Web sites. First, researchers may collect observational data from adolescents’ Web profiles without contacting the subjects. This research method commonly involves observation of public information and could be considered exempt from the need for institutional review board (IRB) approval. Second, researchers could use a social networking Web site to identify and communicate with potential subjects for recruitment into a research study. Third, researchers could use the functionality of a social networking Web site within an intervention (eg, recruiting subjects in person to sign in to a health-related MySpace group as an intervention).

Asking teens to volunteer information about health risk behaviors for research purposes has typically garnered strict scrutiny from IRBs, but it is unclear whether collecting this same information via social networking Web sites should or would be viewed similarly. In this article we discuss ethical and regulatory issues in conducting research on adolescents using social networking Web sites.

	SEEKING A PROPER ANALOGY

TOP ABSTRACT SEEKING A PROPER ANALOGY DOES RESEARCH ON SOCIAL... DOES RESEARCH ON SOCIAL... PROTECTING CONFIDENTIALITY DOES RESEARCH ON SOCIAL... INFORMED CONSENT FOR RESEARCH... CONCLUSIONS REFERENCES

 
Research on the MySpace Web site could be viewed as analogous to eavesdropping on conversations that take place in a public place such as a coffee shop. The research subjects involved have chosen to be at the coffee shop, they understand their conversations may be overheard, and recording them often involves only minimal risk. However, these conversations, although held in a public place, are intended for a private audience. Subjects would consider eavesdropping to be impolite or disrespectful at the least and an inappropriate and unconsented invasion of privacy at worst. Although this analogy may be easily grasped, it falls short of capturing the relationship between researcher and subject on social networking Web sites. Social networking Web sites are a venue in which subjects voluntarily publish personal information, including contact information, in a global public forum. Unlike the coffee shop, participants clearly intend for their private information to be available to a wider audience, although they presumably do not expect or intend that researchers will be part of that audience.

A better analogy for research on social networking Web sites would be research on newspaper personal ads. Similar to a MySpace profile, the information is intended to be available to the public and invites correspondence. Both the personal ad and a MySpace profile may contain very personal and intimate information, but this information has been selected by its owner to be published in a public forum. The "subjects" might claim that they did not intend for the information to be used for research purposes, but they could not plausibly claim that the information was private.

	DOES RESEARCH ON SOCIAL NETWORKING WEB SITES PROVIDE AN OPPORTUNITY TO LEARN ABOUT ADOLESCENT HEALTH THAT IS OTHERWISE UNAVAILABLE?

TOP ABSTRACT SEEKING A PROPER ANALOGY DOES RESEARCH ON SOCIAL... DOES RESEARCH ON SOCIAL... PROTECTING CONFIDENTIALITY DOES RESEARCH ON SOCIAL... INFORMED CONSENT FOR RESEARCH... CONCLUSIONS REFERENCES

 
There are several advantages to research using social networking Web sites that are unique to this venue. First, social networking Web sites provide a database of adolescents that is vastly larger than what a typical survey, ethnography, or randomized, controlled trial in adolescent medicine can achieve. The top-10 social networking Web sites attracted an estimated 68 million unique visitors in 2006; the growth rate of MySpace alone was estimated to be 367% last year.⁵ Second, the administrative burden associated with social networking Web-site research is dramatically lower than that of traditional research methods given the ease of identification and recruitment of subjects. Third, observational studies of adolescent behavior can be conducted with exemption from IRB oversight. Finally, research on social networking Web sites could provide an unprecedented opportunity to study and modify adolescent risk behaviors. Adolescents are considered to be a generally healthy population, with the majority of health risks stemming from risk-taking behaviors such as substance use and sexual activity.^9–20 Although research has produced many valuable screening tools for risk behaviors that can be used in clinical settings, adolescents are among the least likely population to visit a physician; studies have suggested that adolescents with either low socioeconomic status or involvement in health risk behaviors are particularly unlikely to seek medical care.^21,22 For adolescents who do visit a doctor, many are not asked about their risk-taking behaviors such as substance use and sexual activity.²³ Innovative approaches should be taken to identify teens who are considering or engaging in risk-taking behaviors and to generate ideas for prevention and intervention efforts. Social networking Web sites may provide a new, efficient, and effective venue for such research. Whether any particular study using social networking Web sites has value will depend on a variety of factors, but these issues are not unique to research using social networking Web sites.

	DOES RESEARCH ON SOCIAL NETWORKING WEB SITES PROMOTE FAIR SUBJECT SELECTION?

TOP ABSTRACT SEEKING A PROPER ANALOGY DOES RESEARCH ON SOCIAL... DOES RESEARCH ON SOCIAL... PROTECTING CONFIDENTIALITY DOES RESEARCH ON SOCIAL... INFORMED CONSENT FOR RESEARCH... CONCLUSIONS REFERENCES

 
Research using social networking Web sites does not provide access to a random sample of adolescents; it provides access to a sample of Internet-using adolescents. However, it is reasonable to conclude that it provides access to a representative sample of adolescents. Studies have shown that the overwhelming majority of adolescents in the United States have access to the Internet at either home or school.^24–26 More than half of adolescents aged 12 to 17 use an online social networking Web site.⁴ Social networking Web sites provide free access and open participation. Studies have suggested that the racial distribution of profile owners is comparable to that of the US population, with some suggestions of higher minority representations on social networking Web sites.^8,27 The availability and popularity of social networking Web sites among teens may provide as much or more fair subject recruitment than some traditional venues for adolescent research such as clinics or schools.

	PROTECTING CONFIDENTIALITY

TOP ABSTRACT SEEKING A PROPER ANALOGY DOES RESEARCH ON SOCIAL... DOES RESEARCH ON SOCIAL... PROTECTING CONFIDENTIALITY DOES RESEARCH ON SOCIAL... INFORMED CONSENT FOR RESEARCH... CONCLUSIONS REFERENCES

 
One concern in publishing data regarding social networking Web sites is maintaining confidentiality of the subjects. Many teens post their first name and photograph on their public Web profile, and fewer post their full name, telephone number, or address.²⁴ Although this information is public, researchers should still use the same standards of protecting confidentiality as they do for any other research study to avoid linking personally identifying and potentially damaging information. The existence of identifiable information on a public Web site does not justify secondary disclosure of this information in a presentation or publication. An analogy may be made with police records of teens involved in drug use, or victims of sexual assault. News media commonly do not disclose the names of such individuals, particularly if they are minors, although they could legally do so. There are other examples of research that may be legally permissible under the regulations without IRB review (eg, research on brain-dead patients²⁸) but raise moral concerns that suggest there should be high standards for IRB review and consent.

	DOES RESEARCH ON SOCIAL NETWORKING WEB SITES INAPPROPRIATELY INVADE PRIVACY?

TOP ABSTRACT SEEKING A PROPER ANALOGY DOES RESEARCH ON SOCIAL... DOES RESEARCH ON SOCIAL... PROTECTING CONFIDENTIALITY DOES RESEARCH ON SOCIAL... INFORMED CONSENT FOR RESEARCH... CONCLUSIONS REFERENCES

 
With new technologies, researchers can invade the lives of adolescents more than ever before. Studies have been conducted in which subjects voluntarily relinquished privacy by allowing cameras to be mounted in their cars or provided journals (recorded by using handheld computers) of their emotions after sexual intercourse.^29–31 Regarding social networking Web-site research, the amount and type of data available on adolescents’ Web profiles varies according to the security setting. Adolescents on social networking Web sites have the option to protect themselves from unwanted scrutiny by setting their profiles to "private," which allows only selective access by chosen persons. Adolescents who choose to set their profile settings to "public" allow viewing by any visitor to the Web site. Therefore, adolescents who create a Web profile may choose the level of privacy they find comfortable and, arguably, cannot complain that a researcher intruded without permission.

Although Web profiles may be publicly available, it can be argued that teens do not post their personal information with the intent of becoming a research subject. It can also be argued that attracting the attention of researchers with one's profile content is less dangerous than other attention that a teen may attract to one's profile, such as attention from bullies or unwanted sexual solicitation. Studies have shown that 10% to 20% of online teens have been targets of unwanted sexual solicitation.³² In addition, anecdotal evidence suggests that some businesses and universities are searching the Internet for information about potential employees and students.^33–35 Therefore, displaying personal information about risk behaviors may also adversely impact teens’ future employment or educational opportunities, which would certainly be another unintended consequence for the profile owner. For researchers who recruit subjects via social networking Web sites, recruiting adolescent subjects into a research project via social networking Web sites may alert teens to how public their posted information has really become. Nonetheless, even if the risks of being an unwitting research subject are less than the risks of daily life, it does not follow that it is acceptable for subjects to be recruited as research subjects without meaningful consent from the subject and/or an appropriate surrogate, such as a parent.

	INFORMED CONSENT FOR RESEARCH THAT INVOLVES ADOLESCENTS ON SOCIAL NETWORKING WEB SITES

TOP ABSTRACT SEEKING A PROPER ANALOGY DOES RESEARCH ON SOCIAL... DOES RESEARCH ON SOCIAL... PROTECTING CONFIDENTIALITY DOES RESEARCH ON SOCIAL... INFORMED CONSENT FOR RESEARCH... CONCLUSIONS REFERENCES

 
Informed consent is a core principle of research that involves human subjects.³⁶ There are 3 levels of consent to consider regarding adolescent research using social networking Web sites: consent of the research participant or guardian, consent of the MySpace community, and consent of the MySpace enterprise itself.

Consent of the Research Participant or Guardian
IRBs generally require adolescent assent and parental consent for an adolescent's participation in a research project.³⁷ Therefore, recruiting adolescents via a social networking Web site for a research project may require obtaining parental consent. However, in some research situations, weighing the individual risks and benefits to the teen of obtaining parental consent is merited.

Consider, for example, a situation in which a 16-year-old teenager discloses identifiable information about personal drug use on his publicly available Web profile. A researcher may wish to contact this adolescent regarding participating in an intervention to reduce drug use. In situations such as this one, the risk/benefit ratio for the teen may be more favorable if he is recruited without parental consent. Depending on the amount of information provided on the subject's MySpace profile, the investigator might have data regarding the subject's education, home life, hobbies, and interests. This information may allow the researcher to assess whether the adolescent is able to provide consent to participate in research. However, the investigator will not know with certainty that the subject is able to provide meaningful consent.

Consider a similar situation in which a 16-year-old seeks care at a drug rehabilitation clinic. On his arrival at the clinic he is asked to participate in a research study that will use information obtained from his intake evaluation. In this case, the investigator also has little way of knowing the true capacity of the potential subject to provide informed consent after this brief contact.

It is clear that the research community is more accustomed to and comfortable with the idea of assessing competence to provide informed consent via personal or telephone contact. However, assessing subjects’ competence when using social networking Web sites should not be subjected to a greater level of rigor than is currently used via any other method of communication. Information presented on potential research subjects’ personal Web profiles may give investigators valuable information about the subjects’ abilities to provide informed consent. A subject's education level, language ability, reasoning skills, and personal interests may all be displayed on the profile, which can provide as much or more information than could be obtained from a brief in-person encounter. During the process of subject recruitment, communication via e-mail or telephone can also provide information about the individual's capacity to provide consent. This communication may be particularly important in research that involves social networking Web sites because of the possibility that the Web profile may be fabricated; it is unclear how often this occurs. Although social networking Web sites may present new challenges for assessing adolescents’ ability to provide meaningful consent, these challenges are not qualitatively greater than those that already exist in recruiting adolescent subjects in person or via other methods of communication. In summary, reasonable assessments can be made from a personal Web profile regarding an adolescent's capacity to consent, probably as reasonable as can be attained in a brief personal encounter. One's own IRB can and should evaluate an individual research project to determine how to best approach informed consent for that project.

Consent of the MySpace Community
Some researchers have raised concerns regarding what obligations exist for researchers toward the MySpace community. Suggestions have included obtaining consent from the MySpace community or requiring researchers to be members of the MySpace community. When evaluating the validity of these concerns and suggestions, a first consideration is the definition of community. When conducting research the term "community" usually implies a group of people with a distinctive identity. This identity must be considered and respected when doing research within that community. For example, when conducting a research study of an online support group for rape survivors, a researcher would clearly want to obtain the input and approval of that group's moderator and then announce one's presence as a researcher to the group. With a social networking Web site such as MySpace, the community is made up of millions of individuals with no defined aspects that link them together other than sharing the same online space. Profile owners include people of all genders, races, and cultures and a wide range of ages. MySpace users are as much of a community as cellular telephone users.

Even when conducting research on a large community that possesses a distinctive identity, such as the black community or the cancer-survivor community, obtaining the consent of the group as a whole is futile. Who can truly speak on behalf of the group of cancer survivors? This is an unanswerable question. Although obtaining group consent is a lofty goal often encountered in demographic research, neither the process nor goals can be operationally defined or concretely achieved.

Some researchers have raised the question of whether social networking Web site researchers have an obligation to become members of Web sites such as MySpace and create personal Web profiles to show respect for the MySpace community. It is not clear from where this obligation arises, because it is not a general ethical research principle. There are certainly advantages to researchers joining MySpace, such as promoting a good-faith effort to disclose research efforts to other members or providing an opportunity to interact with other members. However, researchers cannot be expected to join all groups in which they conduct research. For example, a researcher who is studying pregnancy outcomes cannot be expected to have experienced a pregnancy to conduct such research. Therefore, joining MySpace as a researcher may be virtuous but should not be considered to be a duty.

Consent From MySpace, the Enterprise
When conducting research on a particular Web site such as MySpace, is the consent of MySpace necessary? A first consideration is that the MySpace terms and conditions explicitly state that they do not own the Web profiles’ content, which implies that individuals’ Web profiles are the sole property of the individuals who created them.³⁸ Second, as a business organization with primary concern for profit, it cannot be assumed that MySpace administrators have permission to speak on behalf of all MySpace profile owners. Last, some researchers feel that contacting MySpace for permission to conduct research by using the Web site is not necessary, because it is analogous to contacting individual telephone companies for permission to conduct a random-digit-dial survey. We contacted MySpace to invite them to comment on this article's content but did not receive a reply.

When conducting research on a particular social networking Web site such as MySpace, there is no clear ethical basis for requiring consent from that Web site as a group or an organization.

	CONCLUSIONS

TOP ABSTRACT SEEKING A PROPER ANALOGY DOES RESEARCH ON SOCIAL... DOES RESEARCH ON SOCIAL... PROTECTING CONFIDENTIALITY DOES RESEARCH ON SOCIAL... INFORMED CONSENT FOR RESEARCH... CONCLUSIONS REFERENCES

 
Each new technology brings new opportunities and challenges to the world of research. We have offered an ethical framework to guide researchers, sponsors, and IRBs in making informed and appropriate decisions.

	FOOTNOTES

 
Accepted Oct 9, 2007.

Address correspondence to Megan A. Moreno, MD, MSEd, University of Washington, Box 359300, Seattle, WA 98105. E-mail: megan.moreno{at}seattlechildrens.org

The authors have indicated they have no financial relationships relevant to this article to disclose.

	REFERENCES

TOP ABSTRACT SEEKING A PROPER ANALOGY DOES RESEARCH ON SOCIAL... DOES RESEARCH ON SOCIAL... PROTECTING CONFIDENTIALITY DOES RESEARCH ON SOCIAL... INFORMED CONSENT FOR RESEARCH... CONCLUSIONS REFERENCES

 

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PEDIATRICS (ISSN 1098-4275). ©2008 by the American Academy of Pediatrics

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Ethical framework development

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This Article Abstract Full Text (PDF) Submit a response View responses Alert me when this article is cited Alert me when eLetters are posted Alert me if a correction is posted Citation Map Services E-mail this article to a friend Similar articles in this journal Similar articles in Web of Science Similar articles in PubMed Alert me to new issues of the journal Add to My File Cabinet Download to citation manager Request Permissions Citing Articles Citing Articles via HighWire Citing Articles via CrossRef Citing Articles via Google Scholar Google Scholar Articles by Moreno, M. A. Articles by Christakis, D. A. Search for Related Content PubMed PubMed Citation Articles by Moreno, M. A. Articles by Christakis, D. A. Related Collections Office Practice Social Bookmarking                         What's this?