Thousands of women who carry mutations in the genes BRCA1 and BRCA2 and joined ‘private’ Facebook groups recently learned that their groups were vulnerable to a Chrome plug-in that allowed marketers to discover group members’ names and other private health information. That Chrome plug-in has since been removed from this, and apparently all other private groups, but has left a deep scar in the BRCA community’s trust in Facebook.

Many people have had their privacy breached on Facebook. So how are patient groups different, and why should we be particularly concerned by this violation? Perhaps the privacy needs of patient groups are not well understood by outsiders, so I will use the BRCA group as an overarching example.

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