Ethical Issues in Social Media Recruitment for Clinical Studies: Ethical Analysis and Framework

Abstract

Background Social media recruitment for clinical studies holds the promise of being a cost-effective way of attracting traditionally marginalized populations and promoting patient engagement with researchers and a particular study. However, using social media for recruiting clinical study participants also poses a range of ethical issues. Objective This study aims to provide a comprehensive overview of the ethical benefits and risks to be considered for social media recruitment in clinical studies and develop practical recommendations on how to implement these considerations. Methods On the basis of established principles of clinical ethics and research ethics, we reviewed the conceptual and empirical literature for ethical benefits and challenges related to social media recruitment. From these, we derived a conceptual framework to evaluate the eligibility of social media use for recruitment for a specific clinical study. Results We identified three eligibility criteria for social media recruitment for clinical studies: information and consent, risks for target groups, and recruitment effectiveness. These criteria can be used to evaluate the implementation of a social media recruitment strategy at its planning stage. We have discussed the practical implications of these criteria for researchers. Conclusions The ethical challenges related to social media recruitment are context sensitive. Therefore, social media recruitment should be planned rigorously, taking into account the target group, the appropriateness of social media as a recruitment channel, and the resources available to execute the strategy.

Practical Benefits, Challenges, and Recommendations on Social Media Recruitment: Multi-Stakeholder Interview Study

“…In the following, we contextualize the expert opinions on social media recruitment and highlight some context-specific benefits and challenges. As discussed elsewhere by our group, the ethical dimension of using social media as a recruitment tool should be evaluated first [ 14 ]. This especially applies when vulnerable individuals are recruited, which are here understood as individuals who are not able to protect their own interests [ 24 ].…”

“…Based on a literature review [ 14 ], we identified a list of relevant stakeholders to assess the practical, ethical, legal, and social implications of social media recruitment to define the inclusion criteria. Participants who were eligible were researchers or professionals with practical or theoretical knowledge of social media or clinical study recruitment from the clinical, legal, social science, ethics, public relations, and technology domain.…”

“…The optimal use of social media for recruitment purposes depends, for instance, on the study type and the study team’s existing knowledge of social media recruitment [ 14 ]. However, the inconsistent reporting of social media as a recruitment tool for research makes it difficult to assess the benefits and challenges of different study designs [ 15 ].…”

Rare disease research powered by empowered patients: solving the zebra puzzle through social media

“…There are also a wide range of ethical challenges that come to social media recruitment and this is the reason this kind of recruitment must be planned rigorously, always taking into account the target group, the appropriateness of the SoMe channel, and the available resources to get this done. 10 We are still in the very early stages of realizing the full potential of social media research in rare cancers. This report by White et al 5 provides evidence of the utility of naturally forming patient groups assisting researchers with developing the evidence base for care and supporting those living with GCT ovarian cancer.…”

“…There needs to be constant monitoring for quality and reliability, all the while retaining the user's confidentiality and privacy. There are also a wide range of ethical challenges that come to social media recruitment and this is the reason this kind of recruitment must be planned rigorously, always taking into account the target group, the appropriateness of the SoMe channel, and the available resources to get this done 10 …”