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US health data in ‘closed’ groups: FB says it isn’t an ‘anon platform, users should know this’

US Congress Members would like to meet Facebook representatives over allegations that it misled users who discussed their medical conditions in “closed” groups, reports Gizmodo.

These users believed that their discussions were private and anonymous. However, Facebook, told the users that they should have understood that it is “not an anonymous platform.” In an open letter to Facebook, members of the Congress questioned Facebook’s privacy practices, especially those regarding closed groups for medical issues.

Patients’ complaint to the FTC

The letter came after a groups of patients accused Facebook of misleading them about their privacy. The group alleged that Facebook asked users to join online medical support groups, and led them to believe the groups are private.

  • Patients claimed that the personal information of the users in the closed groups may have been made available for companies and individuals who shouldn’t have access to it
  • The complaint claimed that Facebook failed to disclose that the group members’ data could be mined for ad targeting, and shared with third parties
  • Elaborates that the users shared information about substance abuse, parenting transgender children, HIV status, sexual assault history
  • According to The Hill, health experts from the group who filed the complaint, used an app to download the names of 10,000 people who were had tested positive for the BCRA gene which causes breast cancer. They did so to support their allegations against Facebook. 

Congress members’ letter to Facebook

The US members of Congress’ open letter to Facebook states:

  • Facebook lacks transparency about how it gathers personal information and “synthesize” it into suggestions for medical support groups
  • Labeling those groups as “closed” may have misled users into revealing more personal information than they otherwise would have
  • Facebook failed to notify group members that their information may have been improperly accessed by companies, cyber-bullies and others
  • Even insurance companies may have had access to these groups, and used the information to make insurance decisions.

Facebook told Gizmodo that it is not an anonymous platform, and that real-name identity was at the “center of the experience and has always been.“It’s intentionally clear to people that when they join any group on Facebook, other members of that group can see that they are a part of that community…” said Facebook.

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