Welcome
Advocacy site seeking reform of data ethics at Crisis Text Line.
Photo credit Hilary Freed, used by permission.
HOME PAGE UPDATE POLICY:
This Home page is current to January 30, 2022. No updates are planned until Crisis Text Line, Inc. implements informed consent practices for research, if any, on crisis conversation transcripts, and for any long-term storage of crisis conversations. [Page edited April 17, 2023 correcting number of co-author affiliations in Ethics Paper and clarifying that “anonymization” of data is claimed by Crisis Text Line, as opposed to actually achieved.]
CAN WE
QUESTION
CRISIS TEXT LINE ?
Definitely, Yes
Crisis Text Line provides a vital public service to many in need.
It also takes advantage of people at their most vulnerable moment.
Both can be true.
This site shines a light on Crisis Text Line’s unethical, repugnant practices:
1. Lack of informed consent for storing and using crisis conversations.
2. Commercial use of “anonymized” crisis conversations.
There is hope. The hope is that awareness will lead to reform. Persons experiencing crisis deserve to receive help, and to be fully respected.
Exploitation of vulnerable persons is unacceptable.
LACK OF CONSENT
IS
LACK OF RESPECT
Lack of Consent
Persons experiencing crisis don’t have time or inclination to read a 4000+ word Terms of Service & Privacy agreement. Many are under age 18. People who are not experiencing crisis rarely read such agreements.
Yet Crisis Text Line claims everyone using the service since it began in 2013 consented, giving permission for everything it does with the conversation transcripts.
These millions of messages are detailed, profoundly sensitive stories, words and experiences. They were given with expectation of privacy. The claimed “anonymizing” of the transcripts does not create permission or consent for use.
Consider words to the effect, “By continuing to use the service, you agree to our Terms, here’s the link“. No one can honestly think that is informed consent from someone in crisis. Definitely not consent for such broad permissions as: “We may collect, use, transfer, and disclose non-Personally Identifiable Information for any purpose…“
Crisis Text Line has the backing of prestigious institutions, universities, professionals, and published research. What is happening here? It’s a question worth exploring.
More MONEY MONEY
MONEY MONEY
For-Profit Spinoff Company Loris.ai, Inc.
In 2016, Crisis Text Line’s website said “…we will NEVER share data…for commercial use…Are you selling this? Nope. Heck no. Not gonna happen. Yuck. Gross. (Read: no commercial use. Never ever ever.)”
In 2017, Crisis Text Line incorporated for-profit Loris.ai, Inc. and said “How can we fundraise in a way that helps us further our purpose of putting more empathy in the world? The answer: a subsidiary for-profit venture called Loris.ai…”
In 2018, Loris.ai launched its website which said
“PROPRIETARY EDGE Crisis Text Line has trained over 12,000 Crisis Counselors who have handled over 62 million messages with an 86% approval rating. Simply, the organization knows how to handle hard conversations. The intelligence gleaned from both the Crisis Text Line training and large sentiment-rich data corpus will be leveraged to create Loris.ai enterprise software.”
Read: Timeline for the change in ethical standard.
ETHICS CHECK
ON THE
ETHICS COMMITTEE
Data Ethics Committee Function and Purpose
Crisis Text Line has a Data Ethics Committee, now called the Data, Ethics and Research Advisory Board.
During the time from 2016 to 2017 Crisis Text Line did a complete ethical turn-around regarding commercial use of crisis conversations. In 2016 it vowed never (“never ever ever“) to use conversation data for commercial purposes. Then in 2017 it embraced commercial use, even forming its own for-profit corporation to develop customer service software.
Fifteen out of 16 members of the data ethics committee in 2016 were the same members in 2017.
How can such a radical change in ethical standard be explained while the same Data Ethics Committee was advising the corporation?
ETHICS CHECK
ON THE
ETHICS PAPER
2019 Published Paper on Ethics of Research
During 2016-2017, and partly funded under a $962,080 grant from the Robert Wood Johnson Foundation, Crisis Text Line conducted an 18 month pilot study. The study was to consider ethics, privacy, and security issues for conducting research on the crisis conversations, stored as data. The study and its findings were described in a peer-reviewed paper published in early 2019 in the Journal of Medical Internet Research.
Quoting from the paper:
“CTL convened a panel of academic and technology sector experts to form a data ethics committee…The final data ethics committee had 15 members from 13 institutions and was chaired by CTL’s chief data scientist...”
Comment: The members of the data ethics committee for the study were the same as the Data Ethics Committee advisors to Crisis Text Line, Inc.
Quoting from the paper, under the topic of research ethics for consent:
“CTL provides texters with a link to an easy-to-understand Terms of Service, including a disclosure of potential future data use, before every crisis conversation“
More WHAT ABOUT
RESEARCH ?
What about the Greater Good?
Research does not bring a greater good if it uses unethically sourced data. There’s a cost for taking advantage of vulnerable people within our systems of health care. Those in the system, with the least amount of power to do anything about it, bear the brunt. They feel it. They are tired of it.
Without consent, what Crisis Text Line has is millions of unethically sourced intensely personal, private conversations. The research papers on the conversations, that I have personally read, all address consent in some way as is required for publication. They rationalized that consent was properly granted, or that it wasn’t needed.
How can this be? Could it be we have systems where institutions, researchers, peer-review, and publications favor getting the research done. The systems favor a view that THEY know best on behalf of the research subjects.
Did anyone stop to ask the million or so individuals so far, who unknowingly contributed their words, their experiences, their struggles, to Crisis Text Line’s data store–how they feel about it? We know it’s not possible to ask them. So do we conclude it’s not necessary to ask because research must be done?
Crisis Text Line claims that it’s not subject to current HIPAA regulations, so there are few regulatory limits on its use of the conversations. Crisis Text Line has a vested interest in its claims that consent has been granted from persons using the service. So far, the research community and the institutional systems have not questioned that claim.
The research community needs to start questioning.
More: research papers listed by Crisis Text Line.
BIG DATA
Ties to Big Data
Crisis Text Line has ties to Big Data. It’s hard to know the extent of financial connection because anonymous donations are allowed. Income from partnerships is reported as part of federal requirements for non-profits. Partnerships are listed here, and include Facebook, Twitter, Google, Youtube, Reddit, and Microsoft. Affiliations to Microsoft Research and Reddit are disclosed within Board of Director and Advisor listings. From Crisis Text Line’s website “We’ve collected one of the largest health data sets in the world…”
The partnership corporations and organizations are supporting the mission of Crisis Text Line, but there is a general lack of transparency about what data is being provided to partners, what algorithms are allowed, and how much money is exchanged, including donations.
Research on the crisis conversations is beginning to include Natural Language Processing, machine learning algorithms. Closeness with Big Data, perpetual storage of conversations, and self-regulation are a troubling combination.
There will always be an intense desire from Big Data to teach its algorithms how to read sentiment, even to create artificial intelligence capable of using calming techniques.
Transparency is a needed reform. Without it, closeness to Big Data is cause for uneasy feelings.
Regardless, no amount of security precautions or claimed “anonymizing” protocols will create informed consent to use the crisis conversations.
TWO VERY
DIFFERENT
ORGANIZATIONS
Manipulation Techniques from Corporate
I was a volunteer when I began asking questions about data ethics. I was completely open, documented what I did, and carefully followed Crisis Text Line’s protocols for internal feedback. Then, I was warned and terminated.
Corporate leadership took notice of my questions about Loris.ai, Inc. and consent for use of data. I was asked by the corporate Vice President, who also serves as General Counsel, to participate in a video conference meeting with him and his legal assistant. Over the course of two such meetings, I was told I was entitled to my own opinions, but maybe the organization wasn’t a good fit for me. I was told that if I shared the opinion paper (that I told them I was preparing), I would be terminated. I shared my opinion paper and my volunteer login credentials were removed within hours.
More ACCOUNTABILITY
&
COMPLICITY
With Awareness Comes Responsibility
Individuals and organizations have given Crisis Text Line almost universal support. It is a trusted organization. The organization is expanding with global reach. That’s good for response to persons in crisis. But the organization’s abuse of power to store and use crisis conversations as data, must stop.
I believe many people who publicly support Crisis Text Line either don’t know, or haven’t stopped to think about the issue.
This site is for awareness. With awareness comes the right to hold individuals and organizations accountable.
Ask the individuals and organizations below where they stand on consent. You can speak your own mind or share this website and its resources.
Crisis Text Line Directors & Advisory Boards
Any organization that refers people to Crisis Text Line.
Thank you.
Gratitude for You
It’s amazing how much a small gesture means when a person is struggling for whatever reason.
Following my convictions and finding myself in conflict with leadership at Crisis Text Line was unexpected, and difficult.
I hope to be open to feedback and correction. It’s not so important to me that people agree with my views. It’s more important that people are willing to ask questions and follow where they lead, no matter what.
The opinions expressed here are my own. I’ve taken care to accurately present facts. Please contact me with any facts that are in error or added information to include.
Thank you for reading this far. Thank you to those who have reached out to me, and responded to me, in support. It has lifted me up.
Tim Reierson (he/him) (pronounced RYE-er-sun)