By Holly A. Taylor, Ellen Kuwana & Benjamin S. Wilfond Pages: 58-59
The initial contact with a potential subject, maintaining contact with enrolled subjects, and recontacting previous subjects are all key components to health care research success. Investigators have begun to explore using various forms of social media to support these activities. Social media are a possible bridge between researcher and subject, but this connection is not without ethical considerations. Our goal here is to present short vignettes that highlight two different ways that social media may be used as a health care research tool, each with its own set of ethical considerations. The vignettes focus on (1) collecting data and (2) recontacting subjects via their presence on social media.
Accompanying the case vignettes are commentaries by Eric S. Swirsky, JD, MA, Jinger G. Hoop, MD, MFA, and Susan Labott, PhD, ABPP, from the University of Illinois at Chicago, who focus on the need to balance the welfare of subjects with the risk of loss of privacy when using social media sources and resources. Jeanne M. Farnan, MD, MHPE, from the University of Chicago Pritzker School of Medicine, cautions researchers about the validity and reliability of data abstracted from online sources and points out that the way we use social media information data as research data could lead to distrust among future research subjects. Kayhan Parsi, JD, PhD, and Nanette Elster, JD, MPH, from Loyola University Chicago, address the implications of studying children as subjects of online research and best practices regarding future contact methods.
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