New publication in Big Data and Society by Theresa Willem

In recent years, social media has become an important marketplace. But it’s not just everyday gadgets that are advertised on Facebook, Instagram, TikTok and the like. Increasingly, medical researchers are turning to social media advertising to recruit participants for clinical studies. After all, advertising on the subway has long lost its appeal because everyone is looking at their smartphones, anyway, and, of course, it was never targeted enough. It seems logical to recruit, especially hard-to-reach populations, and those with rare diseases via social networks.

But should we really do that? The fundamental properties of social networks, especially built-in predictive analytics, can have a number of negative implications when targeting groups as specific and vulnerable as those with certain diseases.

In their new article, published in Big Data & Society, Theresa Willem and Prof. Rainer Mühlhoff (AI Ethics Osnabrück) give an overview of the ethical and data protection implications of online targeting for clinical studies.

They show how social media advertising for clinical studies in many cases violates the privacy of individual users, creates collective privacy risks by helping platform companies train predictive models of medical information that can be applied to all their users, exploits the weaknesses of existing guidelines in (biomedical) research ethics and is detrimental to the quality of (biomedical) research. Hence, from a balanced point of view, the well-intentioned promises of social media advertisement for clinical studies are untenable. In conclusion, Theresa and Rainer call for updates of research ethics guidelines and better regulation of Big Data and inferential analytics.

Contact details:

Theresa Willem

Phone: +49 17662315637




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