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A recent investigation raised ethical and privacy concerns about sharing data from the texts of vulnerable people.
Crisis Text Line, a non-profit organisation focused on mental health support, has stopped sharing data with its for-profit spin-off that develops AI for customer service teams.
Crisis Text Line previously shared anonymised data, received through texts to its service, with Loris.ai. But the organisation announced earlier this week that it has ended this data-sharing relationship and asked Loris to delete the data it has received to date.
It followed an investigation by Politico last week that looked into the data-sharing relationship between the two organisations.
Politico reported that in return for data that could be used to develop customer support software, Loris had pledged to share some of its revenue with Crisis Text Line. Politico also said the non-profit holds an ownership stake in Loris and the two entities shared the same CEO for at least a year and a half.
The investigation raised ethical and privacy concerns about sharing data from the texts of vulnerable people.
Crisis Text Line’s service connects people over text with counsellors who can provide support on issues such as depression, self-harm and suicide. While the non-profit said the data shared with Loris was scrubbed and anonymous, previous studies have indicated it is still possible to trace records back to specific individuals from anonymised data.
Before the recent change to its data policy, those who tried to access Crisis Text Line’s service were provided with a privacy consent document and information on its data-sharing practices. But concerns were raised that users may not have understood what they were agreeing to.
“We understand that you don’t want Crisis Text Line to share any data with Loris, even though the data is handled securely, anonymised and scrubbed of personally identifiable information,” the organisation said in a statement on Monday (31 January).
“We heard your feedback that it should be clear and easy for anyone in crisis to understand what they are consenting to when they reach out for help.”
Crisis Text Line board member Danah Boyd said she agreed with the negative reaction and shared a blog post detailing her “ongoing struggle to govern responsibly and ethically”. She said the organisation was “wrong” to share texter data with Loris.
I am on the board of @CrisisTextLine. Many people are asking us to account for our decisions. To do so, I wrote a blog post detailing my ongoing struggle to govern responsibly and ethically: https://t.co/SMoRFeVrmX (1/3)
— danah boyd (@zephoria) February 1, 2022
“I knew that – had I not been privy to the details and context that I know – I would be outraged by what folks heard this weekend. I would be doing what many of my friends and colleagues are doing, voicing anger and disgust,” she wrote.
Crisis Text Line is a US-based organisation. Its services are also available in Ireland, the UK and Canada.
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