This website uses cookies so that we can provide you with the best user experience possible. Cookie information is stored in your browser and performs functions such as recognising you when you return to our website and helping our team to understand which sections of the website you find most interesting and useful.
Crisis Text Line board member Danah Boyd went even further Monday, saying in a personal blog post of nearly 6,000 words that data practices had been among the issues the text line had grappled with during an "existential crisis" starting in mid-2020.
“I was wrong when I agreed to this relationship,” Boyd wrote separately on Twitter, referring to the arrangement with Loris. She is also a social media scholar who works for Microsoft's research subsidiary.
Loris and Crisis Text Line didn’t immediately respond to requests for further comment on the decision.
In its announcement Monday, Crisis Text Line said it has asked that Loris delete data it has received from the nonprofit and updated its terms of service and privacy policy accordingly. It added that Loris has not accessed any data since the start of 2020.
Outside privacy advocates cheered Crisis Text Line’s announcement, after days of decrying the practice of allowing a for-profit company to obtain data from such fraught conversations.
"This is the right move," tweeted Alan Butler, executive director of the Electronic Privacy Information Center, a leading privacy advocacy in D.C., after Monday's news.
Earlier in the day, Butler had tweeted at length to criticize the data-sharing, writing that "commercial use of this data is anathema and should not happen. Full stop."
The nonprofit, founded in 2013, has gathered what it has called “the largest mental health data set in the world” as part of its work offering free, text-based crisis response. It created Loris in 2018 and says it still holds an ownership stake in the company. The two entities also shared the same CEO for at least a year and a half.
As recently as last week, Crisis Text Line had defended the arrangement as “ethically sound,” saying among other steps that it stripped names, phone numbers and other personally identifying information from its data before sharing it with Loris. The organization also said people reaching out for help had received the legally required notification of its data practices — pointing to an approximately 50-paragraph disclosure statement "to which all texters consent in order to be paired with a volunteer crisis counselor.”
In a series of tweets Saturday, Crisis Text Line wrote that a recent news story — which it did not name — had "cherry-picked and omitted information about our data privacy policies."
"To be clear, we do not sell or share personally identifiable data with any company," wrote Crisis Text Line CEO Dena Trujillo, a longtime Silicon Valley veteran, in a blog post Friday.
Privacy and data experts contacted by POLITICO noted that studies of other kinds of so-called anonymized data sets have found it possible to trace them back to specific individuals. Others questioned whether people who contact a helpline in emotional distress can reasonably be expected to consent to such a lengthy disclosure statement. And some noted that nonprofits — even those holding masses of sensitive personal data — have been largely absent from the debates in Congress about how to regulate privacy practices in the tech industry.
Butler, the EPIC leader, wrote on Twitter that the problems with the relationship went even deeper: "The problem is that their arrangement appears to extract commercial value out of the most sensitive, intimate, and vulnerable moments in the lives of those individuals seeking mental health assistance and from the responses of hard-working volunteers."
POLITICO's reporting also drew statements of concern from Sen. Kirsten Gillibrand (D-N.Y.) and a member of the Federal Communications Commission.
“Someone seeking help in a crisis shouldn't have to worry about their data being sold,” Gillibrand wrote Friday on Twitter, urging Congress to take up legislation she has sponsored — S. 2134 — to create a federal agency in charge of data protection.
Brendan Carr, the senior Republican commissioner on the FCC, wrote to the leaders of Crisis Text Line and Loris on Monday asking them to end their arrangement “to preserve the integrity of mental health hotlines,” and calling some of the nonprofit’s own characterizations of its data sharing “disturbingly dystopian.”
Carr expressed concern about how the data-sharing could affect the public's trust in the federally supported National Suicide Prevention Lifeline, which under a recent FCC action people will be able to reach later this year by calling or texting 988.
“If members of the public fear that the confidentiality of their conversations will be breached by Crisis Text Line’s data-sharing and monetization practices, they are much less likely to reach out during times of need,” Carr wrote in his letter.
Boyd, the Crisis Text Line board member, used her personal blog Monday evening to lay out some of the questions the nonprofit faced. She said the organization’s “most proactive stance” had been to freeze its agreement with Loris in 2020, with a plan to “reconsider” the data sharing this year under new leadership.
“As I listen and learn from how people are responding to this conversation and from the decisions that I contributed to, it is clear to me that we have not done enough to share what we are doing with data and why,” wrote Boyd. “It’s also clear to me that I made mistakes and change is necessary.
"I know that after the challenges of the last year, I have erred on the side of doing the work inside the organization rather than grappling with the questions raised [by] our arrangement with Loris.ai," she added.
Although she wrote in her personal capacity, Crisis Text Line shared her thoughts with its followers on Twitter.
In its update on Monday, Crisis Text Line solicited people’s ideas about how to be more transparent and redoubled its pledges to be more open, saying that "trust is critical" to its mission.
“We hear you,” Crisis Text Line said. “We will always aim to hold ourselves to the highest standards. We are grateful for the feedback from community members and experts.”