Suicide Hotlines Promise Anonymity. Dozens of Websites Send Sensitive Data to FB(themarkup.org)
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Suicide Hotlines Promise Anonymity. Dozens of Websites Send Sensitive Data to FB
https://themarkup.org/pixel-hunt/2023/06/13/suicide-hotlines-promise-anonymity-dozens-of-their-websites-send-sensitive-data-to-facebook
39 comments
I was a volunteer on a crisis hotline, and I thought a great deal about this.
Firstly, very few people on the service I volunteered for had authorities called on them- roughly one in every thousand calls.
Usually, if I mentioned that emergency services would need to be called, this was actually a motivator for the person to work with me and come up with a strategy to keep them safe for the night.
For those few who did need to have authorities, they fell into one of two categories. Firstly, while rare, there was one person where we had to call the police because they knew the system well and knew that if they told me certain things, it would be required that the police would be called. I can't reveal anything about the call, but they told me that they didn't want to be in the situation they were in, and that they'd been in and out of hospitals before. They understood that getting emergency services involved would get them out of their current situation, which happened to be high school.
More commonly are people where they genuinely needed help. My feeling about them was that if someone uses a suicide hotline, they are asking to be convinced not to end their life. They're literally asking for help.
What upset me more are the times when I strongly felt someone needed to have emergency services called, but they didn't check the boxes, so we couldn't.
Firstly, very few people on the service I volunteered for had authorities called on them- roughly one in every thousand calls.
Usually, if I mentioned that emergency services would need to be called, this was actually a motivator for the person to work with me and come up with a strategy to keep them safe for the night.
For those few who did need to have authorities, they fell into one of two categories. Firstly, while rare, there was one person where we had to call the police because they knew the system well and knew that if they told me certain things, it would be required that the police would be called. I can't reveal anything about the call, but they told me that they didn't want to be in the situation they were in, and that they'd been in and out of hospitals before. They understood that getting emergency services involved would get them out of their current situation, which happened to be high school.
More commonly are people where they genuinely needed help. My feeling about them was that if someone uses a suicide hotline, they are asking to be convinced not to end their life. They're literally asking for help.
What upset me more are the times when I strongly felt someone needed to have emergency services called, but they didn't check the boxes, so we couldn't.
> I was a volunteer on a crisis hotline... very few people on the service I volunteered for had authorities called on them- roughly one in every thousand calls....Usually, if I mentioned that emergency services would need to be called, this was actually a motivator for the person to work with me and come up with a strategy to keep them safe for the night.
My decades old experience was exactly this as well. The caller had to tell us where they were (perhaps that is different today) so inherently they were giving us permission.
My decades old experience was exactly this as well. The caller had to tell us where they were (perhaps that is different today) so inherently they were giving us permission.
If you're assuming they are giving you permission, couldn't you just ask "I want to send emergency services your way, is that okay?"
If they say "Yes", you have permission. If they say "No", you do not and have to grapple with whether or not it is okay to send services.
Regardless of if it is or is not okay to perform an active rescue without the caller's permission, its easy to just ask the question
If they say "Yes", you have permission. If they say "No", you do not and have to grapple with whether or not it is okay to send services.
Regardless of if it is or is not okay to perform an active rescue without the caller's permission, its easy to just ask the question
I can't reveal more about my volunteering, but I will say that it was never me who made the calls, it was always a supervisor who could monitor the conversation.
But asking permission is not really an option, and I'll explain why using a different situation. We were also mandatory reporters, which meant that if we knew that a child was being abused, we had to report it to the authorities. This was actually a very high bar to climb, but once we knew it, we had a duty to report. It was a threshold after which it wasn't our decision.
The way it worked with suicidal folks was that they had a risk assessment, and only folks who were both at high risk and were unwilling to work with us to come up with a strategy for staying alive would be at risk for a call.
The "working with" is critical. We weren't looking for "turn your life around" moments, just "Can we keep you alive tonight?" kind of plans. This meant that if someone told us that their plan for the night was to smoke a ton of pot and sleep... while we couldn't condone illegal activity (depending on where they lived), if it kept them alive for the night, it was what we went with.
There was a lot of watching Netflix/Youtube/Tiktok until the person fell asleep- and that was alright with us.
The only people who had emergency services called would be folks where they'd say to us "I'm not willing to come up with a plan" and or "I'm not going to be safe tonight" and when we'd tell them that we'd need to call emergency services unless they told us they'd be safe, still didn't do that.
Like I said, this was very rare, about one in a thousand people.
But asking permission is not really an option, and I'll explain why using a different situation. We were also mandatory reporters, which meant that if we knew that a child was being abused, we had to report it to the authorities. This was actually a very high bar to climb, but once we knew it, we had a duty to report. It was a threshold after which it wasn't our decision.
The way it worked with suicidal folks was that they had a risk assessment, and only folks who were both at high risk and were unwilling to work with us to come up with a strategy for staying alive would be at risk for a call.
The "working with" is critical. We weren't looking for "turn your life around" moments, just "Can we keep you alive tonight?" kind of plans. This meant that if someone told us that their plan for the night was to smoke a ton of pot and sleep... while we couldn't condone illegal activity (depending on where they lived), if it kept them alive for the night, it was what we went with.
There was a lot of watching Netflix/Youtube/Tiktok until the person fell asleep- and that was alright with us.
The only people who had emergency services called would be folks where they'd say to us "I'm not willing to come up with a plan" and or "I'm not going to be safe tonight" and when we'd tell them that we'd need to call emergency services unless they told us they'd be safe, still didn't do that.
Like I said, this was very rare, about one in a thousand people.
> But asking permission is not really an option, and I'll explain why using a different situation. We were also mandatory reporters, which meant that if we knew that a child was being abused, we had to report it to the authorities. This was actually a very high bar to climb, but once we knew it, we had a duty to report. It was a threshold after which it wasn't our decision.
I appreciate your response, from what I gathered it seems like your justification for not asking permission is "well that's not up to me, its higher in the chain". Which I understand, I'm not criticizing /you/ in particular, I understand you are a mandated reporter, I'm critizing the policy itself. I'm saying people who call suicide hotlines should be informed they are talking to a mandated reporter at the beginning of the call.
I appreciate your response, from what I gathered it seems like your justification for not asking permission is "well that's not up to me, its higher in the chain". Which I understand, I'm not criticizing /you/ in particular, I understand you are a mandated reporter, I'm critizing the policy itself. I'm saying people who call suicide hotlines should be informed they are talking to a mandated reporter at the beginning of the call.
I agree entirely.
There were many things that upset me about our system/process. We were a messaging based service (not voice) and we were trained to not lie, but not be entirely forthcoming with folks either. For example, if they asked about privacy, we would skirt around the situation or point them to legal documents rather than be honest.
Another example is that on rare occasion, a person might be talking to a person and they had to leave. In those situations, one of us might continue to talk to them as if we were the other person.
I always felt creepy doing this. Our service was very focused on making everything very procedural and standardized, but in doing so, I felt like we were simply serving up fast-food help- consistent but lacking in depth as well.
I can see both sides of all of this... there were so many people that needed help and not enough volunteers, so standardizing helps. At the same time, I bet that today a ChatGPT service could do basically what we did (and I know they collected our chats and did analytics on them, so I bet that's what they're thinking too).
There were many things that upset me about our system/process. We were a messaging based service (not voice) and we were trained to not lie, but not be entirely forthcoming with folks either. For example, if they asked about privacy, we would skirt around the situation or point them to legal documents rather than be honest.
Another example is that on rare occasion, a person might be talking to a person and they had to leave. In those situations, one of us might continue to talk to them as if we were the other person.
I always felt creepy doing this. Our service was very focused on making everything very procedural and standardized, but in doing so, I felt like we were simply serving up fast-food help- consistent but lacking in depth as well.
I can see both sides of all of this... there were so many people that needed help and not enough volunteers, so standardizing helps. At the same time, I bet that today a ChatGPT service could do basically what we did (and I know they collected our chats and did analytics on them, so I bet that's what they're thinking too).
Why do you assume we did not? The call would get to the point of talking about sending someone and then, if the convo got to that point, we were trained to asked their address so we'd know where to send help. It's not like we just showed up somewhere and sat down in front of a phone -- there was a lot of training and procedure, and the training was repeated.
Perhaps you misread "implicitly" for "inherently"?
Regardless of the training I can only remember this situation happening once or twice.
Things are likely different these days -- emacsen writes of mandatory reporter rules but back in the 1980s we had nothing like that, and no way to know the phone number much less location of the caller.
Perhaps you misread "implicitly" for "inherently"?
Regardless of the training I can only remember this situation happening once or twice.
Things are likely different these days -- emacsen writes of mandatory reporter rules but back in the 1980s we had nothing like that, and no way to know the phone number much less location of the caller.
IMO the problem isn't the consent because your latter point that someone using this is somewhat implicitly consenting to help save their life.
It's that "emergency services" is a euphemism for "the cops, who might harm, kill, or traumatize the person or anyone else who happens to be nearby." I know someone who had police guns drawn on them and was ultimately tazed and arrested because of their roommate's call to a hotline.
Extremely dangerous situation. It's not the fault of the hotline that police exist, but they do exist and so it needs to be considered carefully. Cops are one of the most dangerous things you could possibly expose someone in a mental health crisis to.
It's that "emergency services" is a euphemism for "the cops, who might harm, kill, or traumatize the person or anyone else who happens to be nearby." I know someone who had police guns drawn on them and was ultimately tazed and arrested because of their roommate's call to a hotline.
Extremely dangerous situation. It's not the fault of the hotline that police exist, but they do exist and so it needs to be considered carefully. Cops are one of the most dangerous things you could possibly expose someone in a mental health crisis to.
Are you me?
My ex had that same thing happen to him, police showed up, got tazed and arrested after defending themselves. Now they have a criminal record.
So, obviously there is some bias on my end, its probably why I'm so skeptical regarding justifications of 'implicit consent'.
I mean what justification do hotlines have about not warning of this possibility at the beginning of the call in a 5 second automated message aside from people not agreeing and hanging up. But if they don't agree, it obviously isn't consent.
My ex had that same thing happen to him, police showed up, got tazed and arrested after defending themselves. Now they have a criminal record.
So, obviously there is some bias on my end, its probably why I'm so skeptical regarding justifications of 'implicit consent'.
I mean what justification do hotlines have about not warning of this possibility at the beginning of the call in a 5 second automated message aside from people not agreeing and hanging up. But if they don't agree, it obviously isn't consent.
Duty to warn is enshrined in HIPAA. The key is whether NAMI requires the conversation to be bound under it even though the caller isn't strictly a patient and the phone operator likely has no medical training being staffed by volunteers.
PSA: 988 - US National Suicide Prevention Lifeline
PSA: 988 - US National Suicide Prevention Lifeline
What's the whole list now?
- 211 - local charities
- 311 - city maintenance
- 411 - phone directory, discontinued?
- 511 - traffic
- 611 - phone maintenance, discontinued?
- 711 - phone relay for disabled
- 811 - call before you dig
- 911 - general emergencies
- 988 - suicide
What else?
- 211 - local charities
- 311 - city maintenance
- 411 - phone directory, discontinued?
- 511 - traffic
- 611 - phone maintenance, discontinued?
- 711 - phone relay for disabled
- 811 - call before you dig
- 911 - general emergencies
- 988 - suicide
What else?
- 411 - phone directory, discontinued?
Very diminished in my area. It used to be they would look up something by category, meaning I could say I need a taxi and they would just connect me to one. Now I have to know the exact business name and location. They assume everyone has a smart phone now.
Very diminished in my area. It used to be they would look up something by category, meaning I could say I need a taxi and they would just connect me to one. Now I have to know the exact business name and location. They assume everyone has a smart phone now.
511 is also public transit directions in a few cities
Too many questions here
- does informed consent even apply here? They aren't providing a medical intervention, they aren't medical staff, and the caller is not their patient
- even if it does, is it reasonable to assume that someone who is imminently about to commit suicide lacks capacity? Other than by legally available mechanisms? Probably.
- if you want to kill yourself why would you make it clear to someone over the phone first?
- is consent even necessary for such action by emergency services? I don't think so.
- does informed consent even apply here? They aren't providing a medical intervention, they aren't medical staff, and the caller is not their patient
- even if it does, is it reasonable to assume that someone who is imminently about to commit suicide lacks capacity? Other than by legally available mechanisms? Probably.
- if you want to kill yourself why would you make it clear to someone over the phone first?
- is consent even necessary for such action by emergency services? I don't think so.
That would put suicide hotlines, many driven by volunteers, in serious trouble of being sued.
So I am confused - especially combining with https://www.politico.com/news/2023/04/17/health-industry-dat...
Is it violation of hippa or other privacy laws or anything to use fbook pixel, google analytics and the like when you build a site for a drug rehab or other healthcare type of a site?
The privacy concerned consumer in me wants all these things to be blocked.
As a consultant and site updater I had given up trying to push privacy to tons of stakeholders who are all used to using g-analytics and other services to determine direction of content and business and the like.
Yet this and that politico article make me worry as a site builder but happy as a consumer that thinks maybe all this is about to have sweeping changes. Or not.
Is it violation of hippa or other privacy laws or anything to use fbook pixel, google analytics and the like when you build a site for a drug rehab or other healthcare type of a site?
The privacy concerned consumer in me wants all these things to be blocked.
As a consultant and site updater I had given up trying to push privacy to tons of stakeholders who are all used to using g-analytics and other services to determine direction of content and business and the like.
Yet this and that politico article make me worry as a site builder but happy as a consumer that thinks maybe all this is about to have sweeping changes. Or not.
> Is it violation of hippa or other privacy laws or anything to use fbook pixel, google analytics and the like when you build a site for a drug rehab or other healthcare type of a site?
I don't believe so. HIPAA's data protections are fairly narrow, that not being the original primary concern of the legislation. It covers information about treatment and payments, but I think usage information about a treatment-focused site or portal would be mostly allowed.
There are consultancies that are experts on compliance with these laws and know exactly where the boundaries are and what workarounds are available in some cases. When approached this way it's a much more narrow and flimsy protection than exists in the general cultural awareness of hipaa.
I don't believe so. HIPAA's data protections are fairly narrow, that not being the original primary concern of the legislation. It covers information about treatment and payments, but I think usage information about a treatment-focused site or portal would be mostly allowed.
There are consultancies that are experts on compliance with these laws and know exactly where the boundaries are and what workarounds are available in some cases. When approached this way it's a much more narrow and flimsy protection than exists in the general cultural awareness of hipaa.
Why do website owners put Facebook tracking on their pages voluntarily? Especially when they're running a non-profit site like suicide prevention hotline. What do they gain from it?
Like and share if you feel like killing yourself today!
Like and share if you feel like killing yourself today!
The (lack of) privacy in such sites is outrageous. My country’s de facto standard for medical appointments doesn’t have a Reject cookies button and always pings Meta and Alphabet. https://superdoc.bg/
Well, as luck would have it, Bulgaria being part of the EU, they must comply with the GDRP regulations.
As they do not, you can report a violation to the data protection authorities:
https://commission.europa.eu/law/law-topic/data-protection/r...
As they do not, you can report a violation to the data protection authorities:
https://commission.europa.eu/law/law-topic/data-protection/r...
Also, shoot an email to noyb, they have several complaint cases pending with the Bulgarian Data Protection Authority already and they are good at what they do
https://noyb.eu/
https://noyb.eu/
Thank you, submitted a complaint with the local Commission for Personal Data Protection.
"Would you like to change your status to suicidal?"
This made me LoL
Seriously tho, what FB is doing/has done is disgusting.
Seriously tho, what FB is doing/has done is disgusting.
Heard an opinion that people cover up depression with a sense of humor though...
Still, it feels like a violation of informed consent regarding a service that bills itself as anonymous.