5 ms·

health is a fascinating area of privacy because (1) it's one of the best-known and beefiest privacy statutes (HIPAA) (2) you have a legit negotiation interest

health is a fascinating area of privacy because (1) it's one of the best-known and beefiest privacy statutes (HIPAA) (2) you have a legit negotiation interest in keeping your info private (wouldn't want to tell an insurer about past history lest they charge you more) and (3) insurers can punish you for witholding information by revoking coverage when they find out this is an important step

bpodgursky 6y ago
(2) is not true. SOME people have an interest in keeping their medical info private. Others (probably most people, since healthcare expenses are tail-weighted towards people with VERY expensive medical conditions) have an interest in telling the insurance company EVERYTHING about themselves, because they know if the insurance company is allowed to set up fine-grained risk pools, they'll be in a low-risk and cheaper one. Perfectly reasonable to argue that as a society we don't want insurance to work this way, fully information-dense. But it's not correct to argue that most insurance consumers directly economically benefit from information privacy. It's that we've decided, for society overall, that it's OK to socialize uncommon costs onto the masses.
- michaelmrose 6y ago
  Actually what percentage of people are likely to never be part of a household that would pay more than average. Pretty much only people who die before getting sick and old.
- RodgerTheGreat 6y ago
  It is in no one's best interest to provide DNA to their insurance provider in the interest of "full-disclosure" in hopes of negotiating a lower rate. Let's say that today you are aware of no sequences in your genome which correlate with disease. You give a sample to your provider as proof. Tomorrow, a new link is discovered between a disease and a sequence you do have. Your premiums then go up considerably. There is an unbounded number of future medical discoveries which could cause you to be considered risky. This is the fundamental problem with giving away privacy: it's fine, until one day the world changes, and it wasn't fine.
  - bpodgursky 6y ago
    > Let's say that today you are aware of no sequences in your genome which correlate with disease. You give a sample to your provider as proof. Tomorrow, a new link is discovered between a disease and a sequence you do have. Your premiums then go up considerably. Yes, and everyone else's rates go a bit down . It's not a negative-sum game -- assuming a reasonable competitive market, you're going to get a fair rate in a maximal-information pool. You may increase risk somewhat, but if you know -- from personal and historical experience -- that your family is not especially high risk, you're still on average better off sharing as much information as you can.
    - elliekelly 6y ago
      If you want to look for efficiencies in the (US) insurance market from information sharing it’s going to be far more cost effective to even out the flow of information coming the other direction: transparency of pricing. More price information about everything from drugs, to procedures, to copays and premiums. We’ll all save a lot more money by shining a light further up the chain than we will by individually offering up our DNA to save a few hundred bucks each year. And we’ll get to maintain a bit of privacy, too.
      - bpodgursky 6y ago
        I don't disagree wrt transparency (although for many people I suspect genomic data is worth a lot more than a few hundred bucks a year), but these are separate concerns. I'm just disagreeing with the OP assertion that "submitting your own DNA is always negative value" Definitely making no claim whatsoever as to what the best way to make healthcare more cost-effective is.
  - smabie 6y ago
    It could work the other way to: new analysis on your DNA could reduce your premiums. As such, I don't think it's unreasonable for some people to want to submit their DNA.
    - 6y ago
dtech 6y ago
(2) and (3) really are an US-only thing. In the Netherlands insurers have to provide at least a government-composited insurance package to everyone, and they have to charge all their clients the same rate.
- maxerickson 6y ago
  The ACA in the US only allows age and smoking status for pricing and the companies can't arbitrarily cancel policies anymore. The problem is that a big portion of the country either thinks those things are bad or doesn't understand what they are. https://www.hhs.gov/healthcare/about-the-aca/index.html https://www.hhs.gov/healthcare/about-the-aca/index.html
Spooky23 6y ago
> (1) it's one of the best-known and beefiest privacy statutes (HIPAA) HIPPA protects you from gossiping staff, everything else is fantasy thinking. When my wife miscarried and was hospitalized from an ectopic pregnancy, sufficient PII was available through various channels for enfamil to send a “Welcome Baby” biz via fedex on the would-be due date.
- elliekelly 6y ago
  I’m so sorry. I hear advertising stories like this more and more frequently and I wonder when the US will at least ban targeted advertising based on health data - actual and inferred. It‘s despicable.
  - Spooky23 6y ago
    Thanks, I appreciate the thought. We felt really violated by this, and I ended up buying the marketing list in question for my zip code to understand what happened better. It’s unlikely anything will change for the better. The scrubbing of identity data is pretty easy to reverse engineer by design, as the stream of data is used by pharmaceutical companies, insurance subrogation, etc to do all sorts of things. A pharmaceutical sales rep has a scorecard for your doctor — they bpm now how many scripts were written and filled. The people who gather prescription data have your prescription before your pharmacy does. Some states have fed things like Medicaid claim data to companies to mesh against data from insurers to build models designed to target opioid abuse. By correlating events or behaviors tied to abuse to diagnoses, predictive models can be built from unprivileged data. (Remember when Target predicted someone’s pregnancy before they knew a few years ago?)
- reaperducer 6y ago
  It also doesn't seem to stop organizations with your PII from using your health records to market to you. When I came down with a particular condition, I started receiving advertising solicitations from Walgreens about.
- heavyset_go 6y ago
  Hospitals and practices make signing over the right to share your data with whomever they please a routine process.
o-__-o 6y ago
> (3) insurers can punish you for witholding information by revoking coverage when they find out I keep saying this over and over, read your policy. Make changes before you sign. My life insurance policy has verbiage that specifically says “anything found to be inaccurate after the second year cannot disqualify the insurance” My advisor was explicit in the search for a provider that allowed this. I also may have given up way too much of my information for the privilege, but... worth it.
NightMKoder 6y ago
Interesting note: for the purposes of life insurance coverage, your health information is NOT covered by HIPAA. It’s still technically PHI but life insurers aren’t a “covered entity” under HIPAA so are free to blast your information completely unencrypted to any of their partners. It’s ultimately the same reason Apple Health isn’t covered by HIPAA. It is pretty sketchy though given it’s almost involuntary if you want coverage.

bpodgursky 6y ago

(2) is not true. SOME people have an interest in keeping their medical info private. Others (probably most people, since healthcare expenses are tail-weighted towards people with VERY expensive medical conditions) have an interest in telling the insurance company EVERYTHING about themselves, because they know if the insurance company is allowed to set up fine-grained risk pools, they'll be in a low-risk and cheaper one. Perfectly reasonable to argue that as a society we don't want insurance to work this way, fully information-dense. But it's not correct to argue that most insurance consumers directly economically benefit from information privacy. It's that we've decided, for society overall, that it's OK to socialize uncommon costs onto the masses.

michaelmrose 6y ago
Actually what percentage of people are likely to never be part of a household that would pay more than average. Pretty much only people who die before getting sick and old.
RodgerTheGreat 6y ago
It is in no one's best interest to provide DNA to their insurance provider in the interest of "full-disclosure" in hopes of negotiating a lower rate. Let's say that today you are aware of no sequences in your genome which correlate with disease. You give a sample to your provider as proof. Tomorrow, a new link is discovered between a disease and a sequence you do have. Your premiums then go up considerably. There is an unbounded number of future medical discoveries which could cause you to be considered risky. This is the fundamental problem with giving away privacy: it's fine, until one day the world changes, and it wasn't fine.
- bpodgursky 6y ago
  > Let's say that today you are aware of no sequences in your genome which correlate with disease. You give a sample to your provider as proof. Tomorrow, a new link is discovered between a disease and a sequence you do have. Your premiums then go up considerably. Yes, and everyone else's rates go a bit down . It's not a negative-sum game -- assuming a reasonable competitive market, you're going to get a fair rate in a maximal-information pool. You may increase risk somewhat, but if you know -- from personal and historical experience -- that your family is not especially high risk, you're still on average better off sharing as much information as you can.
  - elliekelly 6y ago
    If you want to look for efficiencies in the (US) insurance market from information sharing it’s going to be far more cost effective to even out the flow of information coming the other direction: transparency of pricing. More price information about everything from drugs, to procedures, to copays and premiums. We’ll all save a lot more money by shining a light further up the chain than we will by individually offering up our DNA to save a few hundred bucks each year. And we’ll get to maintain a bit of privacy, too.
    - bpodgursky 6y ago
      I don't disagree wrt transparency (although for many people I suspect genomic data is worth a lot more than a few hundred bucks a year), but these are separate concerns. I'm just disagreeing with the OP assertion that "submitting your own DNA is always negative value" Definitely making no claim whatsoever as to what the best way to make healthcare more cost-effective is.
- smabie 6y ago
  It could work the other way to: new analysis on your DNA could reduce your premiums. As such, I don't think it's unreasonable for some people to want to submit their DNA.
  - 6y ago

dtech 6y ago

(2) and (3) really are an US-only thing. In the Netherlands insurers have to provide at least a government-composited insurance package to everyone, and they have to charge all their clients the same rate.

maxerickson 6y ago
The ACA in the US only allows age and smoking status for pricing and the companies can't arbitrarily cancel policies anymore. The problem is that a big portion of the country either thinks those things are bad or doesn't understand what they are. https://www.hhs.gov/healthcare/about-the-aca/index.html https://www.hhs.gov/healthcare/about-the-aca/index.html

Spooky23 6y ago

> (1) it's one of the best-known and beefiest privacy statutes (HIPAA) HIPPA protects you from gossiping staff, everything else is fantasy thinking. When my wife miscarried and was hospitalized from an ectopic pregnancy, sufficient PII was available through various channels for enfamil to send a “Welcome Baby” biz via fedex on the would-be due date.

elliekelly 6y ago
I’m so sorry. I hear advertising stories like this more and more frequently and I wonder when the US will at least ban targeted advertising based on health data - actual and inferred. It‘s despicable.
- Spooky23 6y ago
  Thanks, I appreciate the thought. We felt really violated by this, and I ended up buying the marketing list in question for my zip code to understand what happened better. It’s unlikely anything will change for the better. The scrubbing of identity data is pretty easy to reverse engineer by design, as the stream of data is used by pharmaceutical companies, insurance subrogation, etc to do all sorts of things. A pharmaceutical sales rep has a scorecard for your doctor — they bpm now how many scripts were written and filled. The people who gather prescription data have your prescription before your pharmacy does. Some states have fed things like Medicaid claim data to companies to mesh against data from insurers to build models designed to target opioid abuse. By correlating events or behaviors tied to abuse to diagnoses, predictive models can be built from unprivileged data. (Remember when Target predicted someone’s pregnancy before they knew a few years ago?)
reaperducer 6y ago
It also doesn't seem to stop organizations with your PII from using your health records to market to you. When I came down with a particular condition, I started receiving advertising solicitations from Walgreens about.
heavyset_go 6y ago
Hospitals and practices make signing over the right to share your data with whomever they please a routine process.

o-__-o 6y ago

> (3) insurers can punish you for witholding information by revoking coverage when they find out I keep saying this over and over, read your policy. Make changes before you sign. My life insurance policy has verbiage that specifically says “anything found to be inaccurate after the second year cannot disqualify the insurance” My advisor was explicit in the search for a provider that allowed this. I also may have given up way too much of my information for the privilege, but... worth it.

NightMKoder 6y ago

Interesting note: for the purposes of life insurance coverage, your health information is NOT covered by HIPAA. It’s still technically PHI but life insurers aren’t a “covered entity” under HIPAA so are free to blast your information completely unencrypted to any of their partners. It’s ultimately the same reason Apple Health isn’t covered by HIPAA. It is pretty sketchy though given it’s almost involuntary if you want coverage.