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Animal Ethics Biosafety Human Research Ethics Research Integrity

(US) Suicide Hotline Left Ethics Board Out Of The Loop About Data-Sharing With For-Profit Spinoff – Forbes (Alexandra S. Levine | February 2022)

Posted by Dr Gary Allen in Human Research Ethics on May 8, 2022
Keywords: Beneficence, Controversy/Scandal, Institutional responsibilities, International, Privacy, Respect for persons

The Linked Original Item was Posted On February 24, 2022

Medical experts recruited to advise Crisis Text Line say they weren’t consulted about its data sharing and voiced objection to the arrangement. “This would never have passed a sniff test,” one says.

Five years after a top suicide prevention hotline got off the ground, it spun out a for-profit arm, in part to help keep its lights on.

Crisis Text Line was an important service with an admirable mission.  It was worthy of the support it received from the tech sector.  But it is no surprise that ethical questions have been raised about the personal data shared with the commercial spin-off, Loris.  The arguments are: 1. The data does not contain personal identifiers.  2. They shared their plans in 2018.  3. Their privacy statement disclosed that there would be sharing.  But the matters raise the questions: (i) Does consent have a spirit that extends beyond a legal contract? (ii) Can an activity be ethical (as defined in ethics standards) and legal (as defined in privacy legislation) but still be in bad faith with participants?

The organization, Crisis Text Line, provides around-the-clock support through text messaging for people struggling with mental health emergencies including thoughts of suicide. The then-fledgling nonprofit decided it would collect and anonymize data from its text conversations with people in crisis and share that information with its for-profit spinoff, Loris.ai, to help it build and sell customer service software. Crisis Text Line was then Loris’ majority shareholder, and the plan was for Loris to eventually share some of its revenue with the nonprofit.

Crisis Text Line started as the passion project of a tech entrepreneur with close ties to Silicon Valley and backing from some of its best-known founders and billionaires. The nonprofit would also strike partnerships with Meta and Google — some of the most powerful companies on the planet that also helped pioneer the collecting and selling of individuals’ personal information as a standard way to generate revenue.

It’s perhaps no surprise, then, that Crisis Text Line’s Loris spinoff, formed in 2018, was supported by the tech industry and widely applauded in tech publications from the Bay Area to New York, where the nonprofit is based. And against the backdrop of Silicon Valley, where data sharing had become the norm, it also may not have occurred to Crisis Text Line that some might view what it was doing as wrong.

Suicide Hotline Left Ethics Board Out Of The Loop About Data-Sharing With For-Profit Spinoff
Medical experts recruited to advise Crisis Text Line say they weren’t consulted about its data sharing and voiced objection to the arrangement. “This would never have passed a sniff test,” one says.

Related Reading

(Australia) Medicare data used to recruit people with bipolar for research – Sydney Morning Herald (Kate Aubusson | July 2019)

Blowback Against a Hoax – Inside Higher Ed (Colleen Flaherty | January 2019)

‘Silicon Valley is ethically lost’: Google grapples with reaction to its new ‘horrifying’ and uncanny AI tech – Financial Post (Mark Bergen | May 2018)

Cambridge University rejected Facebook study over ‘deceptive’ privacy standards – The Guardian (Matthew Weaver | April 2018)

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