The paper problematises the reliability and ethics of using social media data, such as sourced
from Twitter or Instagram, to carry out health-related research. As in many other domains,
the opportunity to mine social media for information has been hailed as transformative for
research on wellbeing and disease. Considerations around ...
The paper problematises the reliability and ethics of using social media data, such as sourced
from Twitter or Instagram, to carry out health-related research. As in many other domains,
the opportunity to mine social media for information has been hailed as transformative for
research on wellbeing and disease. Considerations around the fairness, responsibilities and
accountabilities relating to using such data have often been set aside, on the understanding
that as long as data were anonymised, no real ethical or scientific issue would arise. We first
counter this perception by emphasising that the use of social media data in health research
can yield problematic and unethical results. We then provide a conceptualisation of
methodological data fairness that can complement data use principles such as FAIR by
enhancing the actionability of social media data for future research. We highlight the forms
that methodological data fairness can take at different stages of the research process and
identify practical steps through which researchers can ensure that their practices and
outcomes are scientifically sound as well as fair to society at large. We conclude that making
research data fair as well as FAIR is inextricably linked to concerns around the adequacy of
data practices. The failure to act on those concerns raises serious ethical, methodological, and
epistemic issues with the knowledge and evidence that are being produced.