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Support and Trust

In a Forbes opinion piece, Ellen Matloff argues that Facebook needs to regain the trust of patient groups that had relied on its closed groups for support.

Matloff, a genetic counselor and CEO of the digital health company My Gene Counsel, says these groups provide people who "desperately need the support, advice, and friendship of others experiencing the same things," she writes. She adds that Facebook championed the creation of such groups.

But, a bug in a Chrome plug-in made users' data available to third parties, as CNBC reported last month. It notes Andrea Downing, who moderates a closed group for women with BRCA mutations, discovered the loophole, which has since been closed.

As Matloff writes, this means group members' private, sensitive information may have been scooped up by outsiders, which they could then shared or use to discriminate against the group members. She likens it to someone having videotaped in-person support groups like those she's held as a genetic counselor. "Hosting private patient groups, of any kind, is a sacred trust. That trust has been broken by Facebook," she writes. "Facebook needs to convince the world that it will not happen again."