Genes for Good, the Bad, and the Ugly: Social Media's Impact on Genetic Testing and Research

By Nicole Choy · Jun 2019

On June 13, 2019, researchers at the University of Michigan published intermediate results from Genes for Good — a genomic research study conducted through a Facebook app and one of the first of its kind to demonstrate effective recruitment via social media.

Why Social Media? The Diversity Problem in Genomics

A staggering 78% of participants in genome-wide association studies (GWAS) were of European ancestry in a recent survey year. Genes for Good aimed to address this by recruiting through Facebook, where approximately 69% of Americans are active. Preliminary demographics show 76% non-Hispanic white participants — compared to 90–95% in most genetic studies — with greater socioeconomic diversity as well.

Social Media and Scams: A Caution

In early June 2019, the US Department of Health and Human Services Office of Inspector General issued a fraud alert warning that scammers were offering Medicare beneficiaries free genetic testing via social media advertisements to obtain Medicare information for identity theft or insurance fraud. Legitimate research will be affiliated with a credible institution, will have IRB approval, and will not ask for your insurance information to participate. When in doubt, independently verify before providing any personal information.