Ethical dilemmas in social media health research [CONFERENCE ABSTRACT]

Ethical dilemmas in social media health research [CONFERENCE ABSTRACT]
Dan Wolf Meyrowitsch, Jacob Lauge Thomassen, Flemming Konradsen, Natasja Kingod, Jane Brandt Sørensen
The Digitally Engaged Patient, 11-12 June 2019; Copenhagen, Denmark
An increasing number of individuals worldwide engage in online communication concerning human health and researchers have identified the need to gain further insights on how individuals and communities engage and respond to particular health topics discussed on social media. However, this type of research is not without ethical dilemmas. Though ethical guidelines on the conduct of online research do exist, there is a lack of practical tools and procedures for the initiation and implementation of research on social media platforms in a thoughtful and respectful manner. When carrying out research involving human subjects, three ethical concepts are central: 1) confidentiality; 2) anonymity; and 3) informed consent. These dimensions need rethinking when conducting research on social media platforms. For instance, a researcher stepping into a social media community would initially present herself, the objective of the research, and implications for participants – as in any other research project. However, it is a challenge to maintain informed consent to a study in a rapidly changing online community with a changing composition of members. Based on hands-on experiences from an ongoing research project in a Danish Facebook group of users and group administrators living with suicidal thoughts, we have encountered a range of challenges related to all three ethical concepts. These challenges have lead us to explore new paths and solutions. In this presentation, we will share our experiences and reflections.

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