Ethical Use of Social Media Data: Beyond the Clinical Context

Abstract

In “Social Media, e‐Health, and Medical Ethics,” in this issue of the Hastings Center Report, Mélanie Terrasse, Moti Gorin, and Dominic Sisti address and suggest recommendations for several ethical issues central to the systematic ethical analysis of the effects of social media on clinical practice, health services research, and public health. The topic is as timely as it is important: social media data collected by device and web applications are constantly increasing and might have both individual and public health benefits. The authors focus their analysis primarily on the health care context. Yet the implications of the intersection of social media data and research warrant focused consideration, as even the most thorough ethical analysis in the clinical context is not necessarily directly applicable in the research context. While many ethical issues are present in both settings, the research context poses new challenges and calls for consideration of distinct factors. In particular, because the legal framework is less protective in research, critical ethical analysis of the research‐specific issues and considerations is essential to the ethical conduct of research using social media data as well as to the design and operation of social media device and web applications themselves.

Using social media analysis to study population dietary behaviours: A scoping review

“…Although the study concerned had Institutional Review Board approval, it serves to illustrate what may be a complex ethical issue. The ethical nature of this form of data collection is not well defined 44 and, notably, many users may agree to ‘terms and conditions’ detailing the use or sale of their data without realising, further complicating the issue for lawmakers and governing bodies 18 . Additionally, although users may knowingly consent to their data being used anonymously, this anonymous data may then be hacked or stolen and reidentified by triangulating the anonymous data with publicly available data to identify the original user without their consent 18 .…”

“…For example, two studies published by Pilar et al 40 in 2018 (see Supporting information, Appendix 2) and Pilar et al 41 in 2021 (see Supporting information, Appendix 2) reveal growing population preference for foods that are organic and sustainable as well as increased popularity in vegetarian diets. A study by Puerta et al 44 in 2020 (see Supporting Information, Appendix 2) also notes positive discussion on social media regarding the gluten free diet, even by individuals without coeliac disease or noncoeliac gluten sensitivity. Keeping informed of both positive and negative trends in dietary consumption and attitudes to certain foods is important for those working in dietary guidance.…”

A Software Tool Aimed at Automating the Generation, Distribution, and Assessment of Social Media Messages for Health Promotion and Education Research

“…As social media is designed to foster social interactions, health promotion and intervention campaigns on social media can lead to user comments that may include identifiable or personal health information, which poses privacy issues, safety risks, and dignitary violations [39]. Trial Promoter has the ability to display user comments received in response to a campaign and surface those comments that may require moderation owing to their toxicity (ie, offensive, disrespectful language that could negatively impact an online conversation).…”

Social Media, Research, and Ethics: Does Participant Willingness Matter?

“…The idea of utilizing social media in clinical research is not recent. From a research perspective, social media is often perceived as a tool to facilitate patient recruitment, monitor patient involvement, and improve rigorous ethical principles applied in clinical research are often not transferred into the online and social media world [4].…”

“…The special topic of the 2020 Yearbook of Medical Informatics is timely since social media data collected by devices and web applications are increasing exponentially. Yet the ethical concerns to use such data for research purposes warrant further consideration, as the rigorous ethical principles applied in clinical research are often not transferred into the online and social media world 4 .…”