8 ms·

Suicide Hotlines Promise Anonymity. Dozens of Websites Send Sensitive Data to FB

81 points by atg_abhishek 3y ago

lilboiluvr69 3y ago
Speaking of anonymity, I wish suicide hotlines would be upfront about the possibility of 'active rescue', that is, calling the police if they think you're about to kill yourself. It seems like a disclaimer they would run at the beginning of the call, but they'd probably lose callers that way. Still, it feels like a violation of informed consent regarding a service that bills itself as anonymous.
- cvccvroomvroom 3y ago
  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
  - Animats 3y ago
    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?
    - local_crmdgeon 3y ago
      511 is also public transit directions in a few cities
    - LinuxBender 3y ago
      - 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.
- emacsen 3y ago
  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.
  - giraffe_lady 3y ago
    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.
    - lilboiluvr69 3y ago
      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.
- psychphysic 3y ago
  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.
- pvaldes 3y ago
  That would put suicide hotlines, many driven by volunteers, in serious trouble of being sued.
stevenicr 3y ago
So I am confused - especially combining with https://www.politico.com/news/2023/04/17/health-industry-data-privacy-00092447 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.
- giraffe_lady 3y ago
  > 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.
NoZebra120vClip 3y ago
[flagged]
- 16bitvoid 3y ago
  > Second, get off your drugs. No offense, but I'd rather leave any advice related to medication to a doctor, albeit one that you trust. While SSRIs (and SNRIs) do tend to make symptoms worse, this is typically just during the onboarding period and lasts 2-6 weeks before the actual relief comes. This is also why a lot of people don't stick with them. Just to throw my personal anecdote, I was on Zoloft for years and the onboarding period sucked, but I eventually found relief after about 4 weeks that nothing had or has come close to, including seeing a psychologist weekly and CBT. The only reason I'm not currently on it is because I'm on a scholarship for a graduate program, which forbids working and my stipend doesn't cover a good enough insurance plan for me to afford seeing a psychiatrist and medication on top of rent and necessities. I can't speak for benzodiazepines or other psychotropics.
  - rrauenza 3y ago
    My understanding is that the danger of SSRI’s is that initially it fixes depression’s side effect of lack of initiative while suicide ideation is still happening.
    - 16bitvoid 3y ago
      Different SSRIs affect everyone differently. My guess is that this is primarily because the underlying cause and mechanisms of depression vary between people. For example, some people may find no relief because their depression isn't caused by a "chemical imbalance" or insensitivity to serotonin, but rather issues with functional connections in the brain. Suicidal ideation remaining intact on SSRIs is definitely not universally true. SSRIs eliminate suicidal ideation for many people. I can say, thankfully, that my suicidal ideation was reduced after a few weeks and then gone after a few months. It didn't just improve my lack of motivation, but also reduced my negative thoughts and emotions. I will say, however, that it also dulled my positive emotions. I'm more inclined to believe that this "zombificafion" is closer to being universally true of SSRIs than suicidal ideation remaining intact, based upon my own experience as well as the reported experiences of others. I used to be part of a clinical neuroimaging lab that studied depression and anxiety. While I didn't do any research on medication or even treatment, I have clinically interviewed a lot of participants that suffer from depression and medications/effects were a major focus point of those interviews. So, I personally feel confident in saying that the effects of SSRIs vary greatly between people and that different SSRIs can affect the same person differently. It's also why I would rather rely on a psychiatrist (that I trust) who I can routinely report the effects to and tailor my treatment rather than some person on the internet telling me to just stop.
expertentipp 3y ago
"Would you like to change your status to suicidal?"
- beeburrt 3y ago
  This made me LoL Seriously tho, what FB is doing/has done is disgusting.
  - expertentipp 3y ago
    Heard an opinion that people cover up depression with a sense of humor though...
rado 3y ago
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/ https://superdoc.bg/
- fransje26 3y ago
  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/reform/rights-citizens/redress/what-should-i-do-if-i-think-my-personal-data-protection-rights-havent-been-respected_en https://commission.europa.eu/law/law-topic/data-protection/r...
  - moritz 3y ago
    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/
  - rado 3y ago
    Thank you, submitted a complaint with the local Commission for Personal Data Protection.
onetokeoverthe 3y ago
[dead]
lee101 3y ago
[dead]
bloody-crow 3y ago
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!

81 points by atg_abhishek 3y ago

Speaking of anonymity, I wish suicide hotlines would be upfront about the possibility of 'active rescue', that is, calling the police if they think you're about to kill yourself. It seems like a disclaimer they would run at the beginning of the call, but they'd probably lose callers that way. Still, it feels like a violation of informed consent regarding a service that bills itself as anonymous.

cvccvroomvroom 3y ago
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
- Animats 3y ago
  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?
  - local_crmdgeon 3y ago
    511 is also public transit directions in a few cities
  - LinuxBender 3y ago
    - 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.
emacsen 3y ago
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.
- giraffe_lady 3y ago
  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.
  - lilboiluvr69 3y ago
    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.
psychphysic 3y ago
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.
pvaldes 3y ago
That would put suicide hotlines, many driven by volunteers, in serious trouble of being sued.

stevenicr 3y ago

So I am confused - especially combining with https://www.politico.com/news/2023/04/17/health-industry-data-privacy-00092447 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.

giraffe_lady 3y ago
> 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.

NoZebra120vClip 3y ago

[flagged]

16bitvoid 3y ago
> Second, get off your drugs. No offense, but I'd rather leave any advice related to medication to a doctor, albeit one that you trust. While SSRIs (and SNRIs) do tend to make symptoms worse, this is typically just during the onboarding period and lasts 2-6 weeks before the actual relief comes. This is also why a lot of people don't stick with them. Just to throw my personal anecdote, I was on Zoloft for years and the onboarding period sucked, but I eventually found relief after about 4 weeks that nothing had or has come close to, including seeing a psychologist weekly and CBT. The only reason I'm not currently on it is because I'm on a scholarship for a graduate program, which forbids working and my stipend doesn't cover a good enough insurance plan for me to afford seeing a psychiatrist and medication on top of rent and necessities. I can't speak for benzodiazepines or other psychotropics.
- rrauenza 3y ago
  My understanding is that the danger of SSRI’s is that initially it fixes depression’s side effect of lack of initiative while suicide ideation is still happening.
  - 16bitvoid 3y ago
    Different SSRIs affect everyone differently. My guess is that this is primarily because the underlying cause and mechanisms of depression vary between people. For example, some people may find no relief because their depression isn't caused by a "chemical imbalance" or insensitivity to serotonin, but rather issues with functional connections in the brain. Suicidal ideation remaining intact on SSRIs is definitely not universally true. SSRIs eliminate suicidal ideation for many people. I can say, thankfully, that my suicidal ideation was reduced after a few weeks and then gone after a few months. It didn't just improve my lack of motivation, but also reduced my negative thoughts and emotions. I will say, however, that it also dulled my positive emotions. I'm more inclined to believe that this "zombificafion" is closer to being universally true of SSRIs than suicidal ideation remaining intact, based upon my own experience as well as the reported experiences of others. I used to be part of a clinical neuroimaging lab that studied depression and anxiety. While I didn't do any research on medication or even treatment, I have clinically interviewed a lot of participants that suffer from depression and medications/effects were a major focus point of those interviews. So, I personally feel confident in saying that the effects of SSRIs vary greatly between people and that different SSRIs can affect the same person differently. It's also why I would rather rely on a psychiatrist (that I trust) who I can routinely report the effects to and tailor my treatment rather than some person on the internet telling me to just stop.

expertentipp 3y ago

"Would you like to change your status to suicidal?"

beeburrt 3y ago
This made me LoL Seriously tho, what FB is doing/has done is disgusting.
- expertentipp 3y ago
  Heard an opinion that people cover up depression with a sense of humor though...

rado 3y ago

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/ https://superdoc.bg/

fransje26 3y ago
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/reform/rights-citizens/redress/what-should-i-do-if-i-think-my-personal-data-protection-rights-havent-been-respected_en https://commission.europa.eu/law/law-topic/data-protection/r...
- moritz 3y ago
  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/
- rado 3y ago
  Thank you, submitted a complaint with the local Commission for Personal Data Protection.

onetokeoverthe 3y ago

[dead]

lee101 3y ago

[dead]

bloody-crow 3y ago

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!