7 ms·

On the other side of this, if massive databases of DNA and medical histories were accumulated, it's possible a great amount of human suffering and harm could be

On the other side of this, if massive databases of DNA and medical histories were accumulated, it's possible a great amount of human suffering and harm could be solved by aggressively mining this data to find out the connection between DNA and various diseases. I mean, besides being denied health insurance because of what someone might find in your DNA, why are you so afraid of something even having your DNA, because it might result in GATACA-like society? If so, we need strong legal protections against discrimination by DNA, but we can't throw out the baby with the bathwater. There's too much good that can be done to human wealth and welfare by eradicating disease and paranoia about theoretical danger should be challenged into laws to protect against discrimination. What do you think Facebook + DNA is going to do to harm you? Try to sell you a pharmaceutical or medical treatment? A cure for balding or erectile disfunction?

benwilber0 9y ago
People already post their 23andMe "results" on their dating profiles to say "I'm clean and healthy with good genetics!" The GATTACA society is rapidly becoming reality, just not institutionalized yet.
- Ultimatt 9y ago
  Great. Maybe we will have less cystic fibrosis in the world. Not sure many people would argue they would be keen for their children to inherit that. There is a big difference between knowing you naturally are a carrier of a disease, and acting on that info, and then manipulating radically and arbitrarily the genetics of humanity. Regulation internationally is fairly clear, sifting out incredibly debilitating disease is going to be ok. Making your children more aryan looking, not so much. Now if only they posted a recent STI panel result too.
  - cbr 9y ago
    "Making your children more aryan looking, not so much" People strongly consider race in dating; we're kind of already there: https://blog.okcupid.com/index.php/race-attraction-2009-2014/ https://blog.okcupid.com/index.php/race-attraction-2009-2014...
  - StavrosK 9y ago
    You'd be fine with someone not finding a partner because they have a chance that their child would carry a disease? Something like "I cannot find a husband because my child will have a 5% chance of cystic fibrosis, so nobody will go for me".
    - DoreenMichele 9y ago
      That isn't remotely how that works. There is no circumstance whatsoever where your child has a 5 percent chance of having CF. CF is a homozygous recessive disorder. Both parents have to contribute a defective gene in order for the child to have CF. If one parent is a carrier and the other is not, there is zero chance of the child having CF, barring random mutations which have been known to happen. If both parents are carriers, there is a 50 percent chance the child will be a carrier, a 25 percent chance the child will have no defective genes and a 25 percent chance the child will have CF. If you actually have CF, you have two defective genes and you can only produce children who are either carriers or who have CF, depending on the genes contributed by the other parent. If the other parent is not a carrier, the children cannot have CF. As someone who both has CF and has raised a child with it, I absolutely do not want more children with CF. It's a horrible burden for the parents and only a deeply sick sadist would wish such a thing upon their child. I have never lacked for male interest. I don't know why the hell that is because I'm quite open about my medical situation. I am now menopausal, so it is a moot point. But I absolutely spent some years agonizing over how to screen out CF carriers from the dating pool. Having another child with CF is one of my worst nightmares. I would rather be taken out and shot.
      - StavrosK 9y ago
        Sure, that's for CF, but my question still stands for all the other heritable diseases.
        DoreenMichele 9y ago
        Uh, no. All other heritable diseases are either homozygous recessive or they are passed via a single dominant gene. In neither case is there a 5 percent chance of passing it on. All recessive disorders follow the exact same math outlined above. This is genetics 101.
- notahacker 9y ago
  I can imagine "look at me, my genes are superb!" having a slightly different effect on potential dating partners' level of interest to the one intended...
- 908087 9y ago
  Is that really a thing now? Sounds like it would have the opposite of the intended effect on most people. How awkward. "I don't really have much to offer, but this DNA surveillance company says I have great genes!"
  - chrisan 9y ago
    I don't think it is _super_ awkward. Most of my friends, prior to having children, get screened https://www.webmd.com/baby/genetic-tests-before-pregnancy https://www.webmd.com/baby/genetic-tests-before-pregnancy I understand the negatives of having everyone compare genes can get kinda "master race"-ish but at the same time it is still heart breaking for kids to be born with stuff that could be prevented. For people really heart-set on having children, I think it would be important to know your odds ahead of time before you get to the point of "ok lets have a kid together".
acct1771 9y ago
> What do you think Facebook + DNA is going to do to harm you? If you're actually looking for a pie in the sky answer, what happens when one if these entities gets popped and someone (state actor?) takes regional data to produce a very effective targeted bioweapon? But the real answer is: you tell us when you find out the hard way. In the meantime, my personal info, of any kind, will continue to be protected, to the very best of my ability.
zaptheimpaler 9y ago
We already have so much data in the healthcare system that people are unable to use or hamstrung by regulation to use (and to be fair it is probably very difficult to make sense of..). One doctor has no idea what another doctor wrote in my chart. Hospitals don't share data most data with others or with scientists for research. When medical research even begins to use the massive amount of data they already have on patients from billions of routine visits, tests and hospitalizations productively, we can think about giving them more. We are so laughably far from that point that adding more data to the mountain doesn't make sense.
pasbesoin 9y ago
Have you ever been denied health insurance? I have. I was 26 or thereabouts (it's been a while), in good health, but had one "touch base" appointment in my prior 2 year medical history (what the prospective insurer wanted, at that time). The appointment had no ongoing medical/treatment implications; it was simply a follow-up with a prior provider. Fortunately, a friend of a friend ran my application "unofficially" by the insurer's underwriters; if it had been a formal application, the result would have ended up in a cross-insurer database of decisions made whether to insure. Yes, there actually is -- was, certainly, at that time -- one, and if you landed in it with a "deny", getting anyone else to insure you became an order of magnitude more difficult. So I was told by this industry professional -- again, as a favor to my professional contact and friend. More recently, I've had a minor condition that an eminent surgeon refused to operate on. Cost/benefit didn't merit it; his recommendation was simply to monitor. When I changed from employer provided insurance to individually insured, I was denied. There was nothing I could do, and the condition did not hinder me in any way. Nonetheless. Again, through the fortune of having a (different) professional contact and friend in the industry, with an allied company, I was able -- via a flaw in their processing of the application -- to get a re-evaluation. And a policy written, albeit with a rider excluding that condition. But their initial reaction, before I "pulled strings"? They didn't offer me a policy with an exclusion rider. Nope, just "deny". SO, many people who are paranoid about this kind of thing and "their health data getting around", are for damned good reason. I agree, the knowledge and health benefits of sharing this data could be enormous. Think of what it could do for epidemiology. Best practices. Etc. Etc. But, you want me to share it? You want me to sign on to a public program of same. You're going to have to guarantee that the data won't be used against participants. As in, you do so use it, and you personally go to jail with a felony conviction and a multi-year sentence. And your company gets severely penalized and, if the behavior is widespread and with significant negative outcomes for those discriminated against, its own "death penalty". You want the data? Demonstrate your good will. In ironclad terms.
- prater 9y ago
  Wait a second. Is this recently? For all of Obamacare's problems - I thought that it at least solved this particular abuse.
TheSpiceIsLife 9y ago
While I agree that throwing babies or bath water out is wasteful... The primary goal of business is to make money. Or, in other words, to isolate us and make us feel inadequate so we buy more things with money we don’t have to impress friends we don’t have. I mean, if I was being cynical. I’m not, but if I was...
simias 9y ago
Why couldn't we have our cake and eat it too? Have anonymised data used for research that could never be traced back to you. A government agency could be in charge for that (like they are for censuses for instance). I'd sooner give that type of information to my democratically elected government than some corporation overseas.
dfxm12 9y ago
Someone is making money from my DNA and it isn't me! In all seriousness though, with as much good as this data can do, it belongs to the public, not to the highest bidder. Also, regulations go ignored and legal protections are only available to people who can afford a lawyer who can prove wrong doing.

benwilber0 9y ago

People already post their 23andMe "results" on their dating profiles to say "I'm clean and healthy with good genetics!" The GATTACA society is rapidly becoming reality, just not institutionalized yet.

Ultimatt 9y ago
Great. Maybe we will have less cystic fibrosis in the world. Not sure many people would argue they would be keen for their children to inherit that. There is a big difference between knowing you naturally are a carrier of a disease, and acting on that info, and then manipulating radically and arbitrarily the genetics of humanity. Regulation internationally is fairly clear, sifting out incredibly debilitating disease is going to be ok. Making your children more aryan looking, not so much. Now if only they posted a recent STI panel result too.
- cbr 9y ago
  "Making your children more aryan looking, not so much" People strongly consider race in dating; we're kind of already there: https://blog.okcupid.com/index.php/race-attraction-2009-2014/ https://blog.okcupid.com/index.php/race-attraction-2009-2014...
- StavrosK 9y ago
  You'd be fine with someone not finding a partner because they have a chance that their child would carry a disease? Something like "I cannot find a husband because my child will have a 5% chance of cystic fibrosis, so nobody will go for me".
  - DoreenMichele 9y ago
    That isn't remotely how that works. There is no circumstance whatsoever where your child has a 5 percent chance of having CF. CF is a homozygous recessive disorder. Both parents have to contribute a defective gene in order for the child to have CF. If one parent is a carrier and the other is not, there is zero chance of the child having CF, barring random mutations which have been known to happen. If both parents are carriers, there is a 50 percent chance the child will be a carrier, a 25 percent chance the child will have no defective genes and a 25 percent chance the child will have CF. If you actually have CF, you have two defective genes and you can only produce children who are either carriers or who have CF, depending on the genes contributed by the other parent. If the other parent is not a carrier, the children cannot have CF. As someone who both has CF and has raised a child with it, I absolutely do not want more children with CF. It's a horrible burden for the parents and only a deeply sick sadist would wish such a thing upon their child. I have never lacked for male interest. I don't know why the hell that is because I'm quite open about my medical situation. I am now menopausal, so it is a moot point. But I absolutely spent some years agonizing over how to screen out CF carriers from the dating pool. Having another child with CF is one of my worst nightmares. I would rather be taken out and shot.
    - StavrosK 9y ago
      Sure, that's for CF, but my question still stands for all the other heritable diseases.
      - DoreenMichele 9y ago
        Uh, no. All other heritable diseases are either homozygous recessive or they are passed via a single dominant gene. In neither case is there a 5 percent chance of passing it on. All recessive disorders follow the exact same math outlined above. This is genetics 101.
notahacker 9y ago
I can imagine "look at me, my genes are superb!" having a slightly different effect on potential dating partners' level of interest to the one intended...
908087 9y ago
Is that really a thing now? Sounds like it would have the opposite of the intended effect on most people. How awkward. "I don't really have much to offer, but this DNA surveillance company says I have great genes!"
- chrisan 9y ago
  I don't think it is _super_ awkward. Most of my friends, prior to having children, get screened https://www.webmd.com/baby/genetic-tests-before-pregnancy https://www.webmd.com/baby/genetic-tests-before-pregnancy I understand the negatives of having everyone compare genes can get kinda "master race"-ish but at the same time it is still heart breaking for kids to be born with stuff that could be prevented. For people really heart-set on having children, I think it would be important to know your odds ahead of time before you get to the point of "ok lets have a kid together".

acct1771 9y ago

> What do you think Facebook + DNA is going to do to harm you? If you're actually looking for a pie in the sky answer, what happens when one if these entities gets popped and someone (state actor?) takes regional data to produce a very effective targeted bioweapon? But the real answer is: you tell us when you find out the hard way. In the meantime, my personal info, of any kind, will continue to be protected, to the very best of my ability.

zaptheimpaler 9y ago

We already have so much data in the healthcare system that people are unable to use or hamstrung by regulation to use (and to be fair it is probably very difficult to make sense of..). One doctor has no idea what another doctor wrote in my chart. Hospitals don't share data most data with others or with scientists for research. When medical research even begins to use the massive amount of data they already have on patients from billions of routine visits, tests and hospitalizations productively, we can think about giving them more. We are so laughably far from that point that adding more data to the mountain doesn't make sense.

pasbesoin 9y ago

Have you ever been denied health insurance? I have. I was 26 or thereabouts (it's been a while), in good health, but had one "touch base" appointment in my prior 2 year medical history (what the prospective insurer wanted, at that time). The appointment had no ongoing medical/treatment implications; it was simply a follow-up with a prior provider. Fortunately, a friend of a friend ran my application "unofficially" by the insurer's underwriters; if it had been a formal application, the result would have ended up in a cross-insurer database of decisions made whether to insure. Yes, there actually is -- was, certainly, at that time -- one, and if you landed in it with a "deny", getting anyone else to insure you became an order of magnitude more difficult. So I was told by this industry professional -- again, as a favor to my professional contact and friend. More recently, I've had a minor condition that an eminent surgeon refused to operate on. Cost/benefit didn't merit it; his recommendation was simply to monitor. When I changed from employer provided insurance to individually insured, I was denied. There was nothing I could do, and the condition did not hinder me in any way. Nonetheless. Again, through the fortune of having a (different) professional contact and friend in the industry, with an allied company, I was able -- via a flaw in their processing of the application -- to get a re-evaluation. And a policy written, albeit with a rider excluding that condition. But their initial reaction, before I "pulled strings"? They didn't offer me a policy with an exclusion rider. Nope, just "deny". SO, many people who are paranoid about this kind of thing and "their health data getting around", are for damned good reason. I agree, the knowledge and health benefits of sharing this data could be enormous. Think of what it could do for epidemiology. Best practices. Etc. Etc. But, you want me to share it? You want me to sign on to a public program of same. You're going to have to guarantee that the data won't be used against participants. As in, you do so use it, and you personally go to jail with a felony conviction and a multi-year sentence. And your company gets severely penalized and, if the behavior is widespread and with significant negative outcomes for those discriminated against, its own "death penalty". You want the data? Demonstrate your good will. In ironclad terms.

prater 9y ago
Wait a second. Is this recently? For all of Obamacare's problems - I thought that it at least solved this particular abuse.

TheSpiceIsLife 9y ago

While I agree that throwing babies or bath water out is wasteful... The primary goal of business is to make money. Or, in other words, to isolate us and make us feel inadequate so we buy more things with money we don’t have to impress friends we don’t have. I mean, if I was being cynical. I’m not, but if I was...

simias 9y ago

Why couldn't we have our cake and eat it too? Have anonymised data used for research that could never be traced back to you. A government agency could be in charge for that (like they are for censuses for instance). I'd sooner give that type of information to my democratically elected government than some corporation overseas.

dfxm12 9y ago

Someone is making money from my DNA and it isn't me! In all seriousness though, with as much good as this data can do, it belongs to the public, not to the highest bidder. Also, regulations go ignored and legal protections are only available to people who can afford a lawyer who can prove wrong doing.