Flexible while familiar: a practical application of a non-exceptionalist approach to social media recruitment in rare disease research

Human research protection programs have accepted social media as an important recruitment tool but continue to have reservations about its use. Here we assess whether current standards for social media recruitment are appropriate for rare disease research and if re-examining them may improve recruitment outcomes in these communities. By comparing the ethical considerations and risk:benefit analysis for traditional (offline) recruitment methods with those of social media recruitment, we were able to develop and test an internal framework to guide social media recruitment. We are currently focusing on expanding this approach to additional communities and obtaining more direct feedback. This poster was presented at the Public Responsibility in Medicine and Research (PRIM&R) Advancing Ethical Research (AER) Conference in November 2021.