Social media research data often lacks ethical guidelines, need recommendations

Researchers often collect social media data without the user's consent, which may stray outside ethical guidelines, according to a study published in Research Ethics.

Collecting population data for health purposes through social media has become more common, but researchers at University of Edinburgh in Scotland argue that ethical guidelines have not caught up to technology. In this study, researchers examined how studies follow ethical guidelines set by Research Councils UK (RCUK).

"Ethics is about more than privacy in this context. Researchers may be using information that has been willingly shared in the public domain, but this doesn't give them carte blanche to do as they please,” said Claudia Pagliari, of the University of Edinburgh's Usher Institute. “Asking permission to use people's social media postings is courteous, although this may be impossible in very large studies. Treating personal information with confidentiality and respect, and avoiding its misuse for unethical purposes, are essential.”

Researchers found that of the 13 guidelines recommended by RCUK, only four specifically mentioned using social media for data collection. Additionally, only a third of 156 published health articles that included social media data reported making any ethical consideration in the use of such personal information.

"Our study highlights a significant gap in UK guidance on mining social media data for research purposes. Funding bodies, learned societies, research organizations and journals―in addition to the researchers themselves―all have a role to play in ensuring such research is carried out to the highest ethical standards,” said Pagliari.  "Having good interdisciplinary guidelines and clear expectations for how these should be applied will help to improve practices."

""
Cara Livernois, News Writer

Cara joined TriMed Media in 2016 and is currently a Senior Writer for Clinical Innovation & Technology. Originating from Detroit, Michigan, she holds a Bachelors in Health Communications from Grand Valley State University.

Around the web

The tirzepatide shortage that first began in 2022 has been resolved. Drug companies distributing compounded versions of the popular drug now have two to three more months to distribute their remaining supply.

The 24 members of the House Task Force on AI—12 reps from each party—have posted a 253-page report detailing their bipartisan vision for encouraging innovation while minimizing risks. 

Merck sent Hansoh Pharma, a Chinese biopharmaceutical company, an upfront payment of $112 million to license a new investigational GLP-1 receptor agonist. There could be many more payments to come if certain milestones are met.