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What is the risk of exposing our health data? To me it is not so obvious, other than maybe embarrassment? Is it like how in our culture we don't like to talk ab

What is the risk of exposing our health data? To me it is not so obvious, other than maybe embarrassment? Is it like how in our culture we don't like to talk about how much money we make? Why are all these things supposed to be secret in the first place?

foolrush 7y ago
Because the right to your private medical issues is at stake. And that ignores the predatory insurance industry and other discriminatory practices as an aside.
triceratops 7y ago
Isn't embarrassment enough? Why do you close the door when you go to the bathroom? In addition, many diseases like STD/STIs or mental illness carry a stigma. Information like that, if inadequately protected, can have a social or even financial cost like losing your job.
- blissofbeing 7y ago
  Maybe if it was public these diseases wouldn't be so stigmatized. It might have a social impact now, but I see that as the issue.
  - smolder 7y ago
    I think you're underestimating people's ability or inclination to abuse information for personal gain.
  - cortesoft 7y ago
    I don't think it should be up to someone else what I am allowed to be embarrassed about, or what I want to keep private. I don't think changing society to not be embarrassed about things being made public is a good solution to privacy concerns. Also, we might have a million, non-embarrassment reasons to want to keep things private. I might not want people to know about my cancer because I want to be able to live my life without having to answer questions about it, or have people treat me as delicate. I might not want people to know I am pregnant because I don't want to have to tell them when I have a miscarriage. Most importantly, I want to be able to have whatever arbitrary reasons I want to keep things private.
Altimos 7y ago
It's not the same as the income situation. In that situation it's about whoever pays you not wanting you to know that you're being undervalued compared to your coworkers. With healthcare it's about not wanting your community to know things and have biases against you and treat you differently because of your medical history. Imagine you used to have cancer and beat it, and independent of that fact are looking for a new job that offers health insurance. If your condition every resurfaces, you're going to be a real expensive hire for your employer in terms of time off (for treatments and recovery) and your new health insurance provider. You might be so expensive that they decide not to hire you, or decide not to cover you. If you want to think of your own cases, think about medical conditions that have been stigmatized over the course of history and how people's actual lives are effected by them.
caseysoftware 7y ago
> Why are all these things supposed to be secret in the first place? Because it's detailed, personal, intimate information about you and your immediate family. Even if there may be some upsides from releasing portions of it, it must be up to you to control and opt into.
reaperducer 7y ago
Because your medical information can be used against you. Want a new job? Nope! We don't want someone with your condition on our team. Want to buy a house? Nope! An AI bot says may not live long enough to pay the loan. Want to get some ice cream? Can't haz. When you swipe your electronic payment method the database says you're at a risk for diabetes. There are thousands of other scenarios.
- SamuelAdams 7y ago
  Also, consider the poor security track record of implantable medical devices [1]. From the source [2]: > The vulnerabilities could allow an unauthorized individual (i.e. someone other than a health care professional) to access and potentially change the settings of an implantable device, home monitor or clinic programmer. Ok cool, so there's millions of implantable cardioverter defibrillators whose voltages can be changed by someone who sits nearby at a restaurant. If they up the ampage high enough, the patient has a heart attack. Now, what if I found out that a sitting president or other elected politician had a small electronic defibrillator implanted in their chest? We could see targeted assassinations look like medical device malfunctions when in reality someone learned about this device, built an exploit for it, and hired someone to sit within bluetooth range to deliver the payload. It's not impossible to do. Unlikely, sure, but this is a result of the high-tech world we are living in. [1]: https://nakedsecurity.sophos.com/2019/03/25/medtronic-cardiac-implants-can-be-hacked-fda-issues-alert/ https://nakedsecurity.sophos.com/2019/03/25/medtronic-cardia... [2]: https://global.medtronic.com/xg-en/product-security/security-bulletins/conexus.html https://global.medtronic.com/xg-en/product-security/security...
- deleted 7y ago
  [deleted]
- blissofbeing 7y ago
  The can't get ice cream one is a bit far fetched eh? I'm sure that no matter if they knew my health history they would still sell me some ice cream :)
  - reaperducer 7y ago
smt88 7y ago
Would you want future employers, romantic partners, loan officers, and/or family members to know your medical history? What if you were HIV+ or taking Viagra? What if you were just sick and didn’t want to be discriminated against? There are life and death implications in medical privacy in most countries. Stigma is real, as are insurance risk algorithms.
- kazen44 7y ago
  > There are life and death implications in medical privacy in most countries. Stigma is real, as are insurance risk algorithms. Hell, in some countries people have been killed because of their medical history. Also, centralizing this data is very dangerous if this data falls into the wrong hands at a later date. A prime example would be the registration of religion which happened in the Netherlands prior to world war 2. (for taxation reasons). Which resulted in a large number of victims during the holocaust in part because of this record keeping.
- cloverich 7y ago
  So... You are advocating that your hiv status should be hidden from your romantic partner? ;) More seriously, unified health record sharing is inevitable, especially if we are to move to universal healthcare. Would you be against a different entity hosting this data, or just Google?
  - smt88 7y ago
    > You are advocating that your hiv status should be hidden from your romantic partner? No, I'm advocating that a corporation or data leak does not get to decide when/how someone's HIV status is revealed. > Would you be against a different entity hosting this data, or just Google? I would be against most entities hosting this data, but Google has proved to be untrustworthy. My ideal situation would be for my medical records to be encrypted and only usable with my explicit permission.
dfalfndfk 7y ago
Imagine even more sophisticated advertising from Big Pharma to the old and vulnerable. That is reason enough. As a society we are getting better at talking about income. We hide _that_ because of a lack of class consciousness. We should absolutely be transparent with income (except when negotiating for a new salary).
blissofbeing 7y ago
So essentially the answer I'm hearing is that there is a fear of what other people will do with the information. Mostly around discrimination and shame.
PavlovsCat 7y ago
What is the risk of talking about this? Why is this article pushed to page 2? 32. How we built Uber Engineering's highest query-per-second service using Go (2016) (162 points, 11 hours ago, 102 comments) 33. Google whistleblower: the medical data of millions of Americans is at risk (160 points, 2 hours ago, 45 comments) Do you join me in my request to make all flags and votes on HN public?
raxxorrax 7y ago
I see you skipped a lot of work because of health issues lately. That aside and completely unrelated, I think you are just not a good fit in our team. I may not be a good person. Or I can rationalize it enough because some people pay me to minimize any risk.

foolrush 7y ago

Because the right to your private medical issues is at stake. And that ignores the predatory insurance industry and other discriminatory practices as an aside.

triceratops 7y ago

Isn't embarrassment enough? Why do you close the door when you go to the bathroom? In addition, many diseases like STD/STIs or mental illness carry a stigma. Information like that, if inadequately protected, can have a social or even financial cost like losing your job.

blissofbeing 7y ago
Maybe if it was public these diseases wouldn't be so stigmatized. It might have a social impact now, but I see that as the issue.
- smolder 7y ago
  I think you're underestimating people's ability or inclination to abuse information for personal gain.
- cortesoft 7y ago
  I don't think it should be up to someone else what I am allowed to be embarrassed about, or what I want to keep private. I don't think changing society to not be embarrassed about things being made public is a good solution to privacy concerns. Also, we might have a million, non-embarrassment reasons to want to keep things private. I might not want people to know about my cancer because I want to be able to live my life without having to answer questions about it, or have people treat me as delicate. I might not want people to know I am pregnant because I don't want to have to tell them when I have a miscarriage. Most importantly, I want to be able to have whatever arbitrary reasons I want to keep things private.

Altimos 7y ago

It's not the same as the income situation. In that situation it's about whoever pays you not wanting you to know that you're being undervalued compared to your coworkers. With healthcare it's about not wanting your community to know things and have biases against you and treat you differently because of your medical history. Imagine you used to have cancer and beat it, and independent of that fact are looking for a new job that offers health insurance. If your condition every resurfaces, you're going to be a real expensive hire for your employer in terms of time off (for treatments and recovery) and your new health insurance provider. You might be so expensive that they decide not to hire you, or decide not to cover you. If you want to think of your own cases, think about medical conditions that have been stigmatized over the course of history and how people's actual lives are effected by them.

caseysoftware 7y ago

> Why are all these things supposed to be secret in the first place? Because it's detailed, personal, intimate information about you and your immediate family. Even if there may be some upsides from releasing portions of it, it must be up to you to control and opt into.

reaperducer 7y ago

Because your medical information can be used against you. Want a new job? Nope! We don't want someone with your condition on our team. Want to buy a house? Nope! An AI bot says may not live long enough to pay the loan. Want to get some ice cream? Can't haz. When you swipe your electronic payment method the database says you're at a risk for diabetes. There are thousands of other scenarios.

SamuelAdams 7y ago
Also, consider the poor security track record of implantable medical devices [1]. From the source [2]: > The vulnerabilities could allow an unauthorized individual (i.e. someone other than a health care professional) to access and potentially change the settings of an implantable device, home monitor or clinic programmer. Ok cool, so there's millions of implantable cardioverter defibrillators whose voltages can be changed by someone who sits nearby at a restaurant. If they up the ampage high enough, the patient has a heart attack. Now, what if I found out that a sitting president or other elected politician had a small electronic defibrillator implanted in their chest? We could see targeted assassinations look like medical device malfunctions when in reality someone learned about this device, built an exploit for it, and hired someone to sit within bluetooth range to deliver the payload. It's not impossible to do. Unlikely, sure, but this is a result of the high-tech world we are living in. [1]: https://nakedsecurity.sophos.com/2019/03/25/medtronic-cardiac-implants-can-be-hacked-fda-issues-alert/ https://nakedsecurity.sophos.com/2019/03/25/medtronic-cardia... [2]: https://global.medtronic.com/xg-en/product-security/security-bulletins/conexus.html https://global.medtronic.com/xg-en/product-security/security...
deleted 7y ago
[deleted]
blissofbeing 7y ago
The can't get ice cream one is a bit far fetched eh? I'm sure that no matter if they knew my health history they would still sell me some ice cream :)
- reaperducer 7y ago

smt88 7y ago

Would you want future employers, romantic partners, loan officers, and/or family members to know your medical history? What if you were HIV+ or taking Viagra? What if you were just sick and didn’t want to be discriminated against? There are life and death implications in medical privacy in most countries. Stigma is real, as are insurance risk algorithms.

kazen44 7y ago
> There are life and death implications in medical privacy in most countries. Stigma is real, as are insurance risk algorithms. Hell, in some countries people have been killed because of their medical history. Also, centralizing this data is very dangerous if this data falls into the wrong hands at a later date. A prime example would be the registration of religion which happened in the Netherlands prior to world war 2. (for taxation reasons). Which resulted in a large number of victims during the holocaust in part because of this record keeping.
cloverich 7y ago
So... You are advocating that your hiv status should be hidden from your romantic partner? ;) More seriously, unified health record sharing is inevitable, especially if we are to move to universal healthcare. Would you be against a different entity hosting this data, or just Google?
- smt88 7y ago
  > You are advocating that your hiv status should be hidden from your romantic partner? No, I'm advocating that a corporation or data leak does not get to decide when/how someone's HIV status is revealed. > Would you be against a different entity hosting this data, or just Google? I would be against most entities hosting this data, but Google has proved to be untrustworthy. My ideal situation would be for my medical records to be encrypted and only usable with my explicit permission.

dfalfndfk 7y ago

Imagine even more sophisticated advertising from Big Pharma to the old and vulnerable. That is reason enough. As a society we are getting better at talking about income. We hide _that_ because of a lack of class consciousness. We should absolutely be transparent with income (except when negotiating for a new salary).

blissofbeing 7y ago

So essentially the answer I'm hearing is that there is a fear of what other people will do with the information. Mostly around discrimination and shame.

PavlovsCat 7y ago

What is the risk of talking about this? Why is this article pushed to page 2? 32. How we built Uber Engineering's highest query-per-second service using Go (2016) (162 points, 11 hours ago, 102 comments) 33. Google whistleblower: the medical data of millions of Americans is at risk (160 points, 2 hours ago, 45 comments) Do you join me in my request to make all flags and votes on HN public?

raxxorrax 7y ago

I see you skipped a lot of work because of health issues lately. That aside and completely unrelated, I think you are just not a good fit in our team. I may not be a good person. Or I can rationalize it enough because some people pay me to minimize any risk.