Ask Crisis Text Line to Reform Its Data Ethics
Ask Crisis Text Line to Reform Its Data Ethics
[UPDATE: February 5, 2022. On 1/31/2022 Crisis Text Line, Inc. announced some concessions following the outcry to the 1/28/2022 POLITICO article. A positive step, but not nearly enough as I explain in my Groundhog Day reply blog post. So, the petition stands. I thank everyone for considering and signing. The support I've received has overwhelmed and lifted me.]
This petition calls on Crisis Text Line, Inc. to phase out its practice of monetizing crisis conversations as data, as soon as possible.
The organization is asked to create a safe space for volunteers and staff to discuss the ethical use of crisis conversation data.
The organization is asked to create and implement a public code of ethics for data storage and use. The code of data ethics should be developed by stakeholders, first: persons with lived experience, volunteers, and staff; also with input from health advocates and experts, and data science ethicists.
[Donations to promote are not requested, but thanks to those who have.]
Quick Link: My Open Letter [jpg format] to Crisis Text Line board, executives, advisors, staff and volunteers. [Android users may prefer jpg format to pdf.]
The Crisis Text Line conversations between persons in crisis and trained volunteers who answer, are stored as data. Personal identifying information is removed and the conversation data is used for purposes such as reporting trends and research. It is a massive dataset and growing. It contains millions and millions of text messages exchanged since 2013 when the service began.
What you may not know is, the anonymized data is also licensed non-exclusively to a for-profit spinoff company. This for-profit company applies data science to seek “learnings” from the crisis conversations to make software. The software is designed and marketed to assist customer service agents assess frustration levels and try to bring calm to customers. Crisis Text Line has a vested financial interest in this commercial use of the data. They say they are sharing empathy and stabilizing their finances, and all has been done legally, ethically and respectfully.
We all realize that the present and future are bringing Big-Data-informed systems, built with algorithms and automated. But it is my firm belief that artificial intelligence should not be harvested from these intimate, vulnerable, trusted conversations.
As a (former) trained volunteer, when I learned about this practice, it concerned me greatly. Volunteers choose every word with care during these fragile, painful, heart-wrenching conversations. Persons in crisis are vulnerable, desperate, panicked, traumatized. Informed consent is an issue. Persons struggling are truly heroes and I feel called to protect the space around their vulnerability when they reach out for help.
I pursued my ethical concern about consent and data monetization from inside the organization. The corporate side warned me to stop, or be terminated, because my opinions were contrary to organization mission. I didn't stop. Within hours of attempting to share my Opinion Paper (link below) in the discussion space reserved for volunteers and staff, my secure login credentials were revoked.
It’s important to distinguish corporate-financial with its particular influences and goals, from the volunteer-staff community. The volunteer-staff community is wonderful, supportive and effective. Crisis Text Line provides a desperately needed service and it should continue to be supported in its mission to be there for people experiencing crisis in their lives. I support this service 100%. If you ever experience a situation of emotional crisis, you can text “HOME” to 741741 and connect with a trained volunteer, 24/7.
How to Bring Change
First, please sign and share to increase awareness. Public opinion matters. As I create this petition I know I'm not alone, but I feel alone, singled out, isolated by the corporation. The corporation has substantial financial, legal, and public relations power, plus relationships with Big Data interests. It won't change easily.
Join me. Add your voice to mine.
Second, if you feel called, speak out. Use the below hashtag, which adds “data” to the #notmycrisistextline of the 2020 reform movement.
Share on Twitter #NotMyCrisisTextLineData Share on your Facebook page.
Who else could benefit from hearing concerns? Here are the members of the Crisis Text Line board of directors; the clinical advisory board; and the data, ethics, and research advisory board. [Around 2/3/2022 Crisis Text Line removed the names of its advisory board members from its website, so I have updated the "members" link to the previous archived page]. Here’s a list of partners. Scroll down, it's a long list.
Choose one that matters to you and bring your concerns to their attention. There are many wealthy benefactors, respected institutions, and dedicated advocates who, thankfully, support Crisis Text Line, they are not hard to find.
More from My Heart
I believe the Crisis Text Line organization, intentionally or not, is taking advantage of the crisis moment, when vulnerable people have little ability to give informed consent for use of their conversation as data. The people I had the privilege to converse with, I hold in my heart. They know life. They share truth in their struggles, born of despair, exhaustion, trauma, that no others can teach. No one can take away the gift that people texting to the service gave me. I owe them, and that’s one reason I’m speaking out.
I believe that corporate Crisis Text Line is taking advantage of the good will of thousands of volunteers who give their time, expertise, and emotional energy to help those in need. Just to be there is powerful, just to respond and listen, because volunteers don’t “save” anyone. They care unconditionally. The algorithms don't know this truth: it’s the voluntary human presence that matters most. I believe the space of healing and empathy that the volunteer community and staff help create, deserves protection, sanctity.
[Android users may have trouble opening the below Dropbox links. You can try cut-paste of the link into a browser like Chrome. Or save time and frustration, request the pdf files by email to: holdspacefree a t g m a i l d o t c o m.]
Read my Open Letter [jpg format] to the Crisis Text Line staff, volunteers, executives, board and advisors.
Want to learn more? Read my August 21, 2021 Opinion Paper [pdf format only]. It's comprehensive and has details about the Crisis Text Line financial model, as best I could research. Much is not publicly available and therefore not known outside the organization leadership and paid staff.
Here’s an August 23, 2021 email [jpg format] that board member Dr. danah boyd sent me, in response to my Open Letter, informing me they already considered the issue, and my actions could potentially cause harm.
Here’s my August 24, 2021 email reply [jpg 1, jpg 2, jpg 3], detailed, because I felt a need to defend myself after corporate put a negative slant on my reform efforts. As of February 6, 2022, no response from anyone at Crisis Text Line.
I initially redacted the names because this isn't personal. This is the corporate side of the organization speaking its truth. I recently revealed some names because they made public statements and for greater accountability.
There can be moments of joy in the middle of these struggles. Let’s keep searching for those moments, because they bring hope. And hope is something that we all want to have.