Social Networking and Online Recruiting for HIV Research: Ethical Challenges

Abstract

Social networking sites and online advertising organizations provide HIV/AIDS researchers access to target populations, often reaching difficult-to-reach populations. However, this benefit to researchers raises many issues for the protections of prospective research participants. Traditional recruitment procedures have involved straightforward transactions between the researchers and prospective participants; online recruitment is a more complex and indirect form of communication involving many parties engaged in the collecting, aggregating, and storing of research participant data. Thus, increased access to online data has challenged the adequacy of current and established procedures for participants’ protections, such as informed consent and privacy/confidentiality. Internet-based HIV/AIDS research recruitment and its ethical challenges are described, and research participant safeguards and best practices are outlined.

Social Media and HIV/AIDS: Implications for Social Work Education

“…Online consent forms restrict user access to important information on the study, which would be easier to obtain in a face-to-face context (Curtis, 2014). In addition, it is difficult to verify competency and understanding of consent for online users (Curtis, 2014).…”

“…Online consent forms restrict user access to important information on the study, which would be easier to obtain in a face-to-face context (Curtis, 2014). In addition, it is difficult to verify competency and understanding of consent for online users (Curtis, 2014). Researchers recommend that consent must be presented in a manner that is understandable and appropriate to the environmental context of the user of social media sites Curtis, 2014).…”

An Online Gratitude Intervention for Young Adults with Advanced Cancer

“…Research team members will not invite potential participants to be their online "friend" thereby restricting access to private information on participant profile pages, giving researchers access only to information that participants make publically available on social networks, until informed consent is given (Curtis, 2014). Additionally an online-ad click sends potential participants to a general interest site where they indicate initial consent to send information to the research team over the Internet, thereby preventing the release of any personal information about the person who clicked the ad to the social network site or to the research team without consent (Curtis, 2014). After providing consent to send information over the Internet, including consent to be contacted by the research team, the remainder of interactions take place via phone or Internet calls where risks involved with information exchange are similar to in-person exchanges (Jerome et al, 2000).…”

“…After providing consent to send information over the Internet, including consent to be contacted by the research team, the remainder of interactions take place via phone or Internet calls where risks involved with information exchange are similar to in-person exchanges (Jerome et al, 2000). Additionally with regards to the collection of confidential, HIPAA-protected health information, all assessments are collected after formal informed consent is obtained, through a secure website built by the study team members, that is not housed on the social networking site and that uses current standards of password protection and is stored behind a firewall (Curtis, 2014), thus meeting all the AMA guidelines for protecting the confidential information of patients. All data is de-identified prior to being downloaded off the website.…”

“…Indication of checkboxes checked 4. Emails sent to the participants This process eliminates the need for more extensive confirmation of comprehension including on-line quizzing of recall regarding the content of the consent form and third party age verification (Curtis, 2014). A copy of the consent form is included in Appendix D.…”