I'm fairly uneducated in this area, can you explains in what ways our own DNAs will be used to our detriment by theses drug companies? (if will leave 23andMe and the likes out of the question)
I can think of a few scenarios that have different conditions/threats:
1. Something that would normally be your own secret to control which is used against you, like discovering you're suddenly un-insurable for condition X that you might not even have known you could get. Other variations in the space include embarrassment/blackmail or aggressive marketing.
2. Exploitation without "fair" compensation, such as if your family has a history of a certain expensive health problem and it turns out those genes are also the key to making an unrelated Miracle Cure, but none of that makes its way back to compensate people for the suffering/cost that enabled the benefit to everyone else.
3. Re-sharing with governments or law-enforcement, bypassing other rights/protections you would normally have.
1. Re: insurance buying the data to be used against you. This seems like a problem that could be solved by other regulatory venues w.r.t. pre-existing conditions in insurance.
2. This is a dramatic overreach of intellectual property. I put in no effort to create my genes and certainly should not be able to withhold certain beneficial amino acid sequences from being used by others simply because I exist. Not to mention the fact that the same gene is probably present in millions of people. Clearly I am not going to do the work to monetize some gene and help save people, so the people who do the actual work should be able to profit from it (unless you think it's better if people who could benefit from it just die). Fair compensation is zero; any finder's fee awarded in such an unlikely technical scenario would be gratuitous.
3. Governments already have this as soon as 23-and-me exists. Whether or not the data was for sale is irrelevant to Uncle Sam.
I can think of one dystopian application off the top of my head.
A pharmaceutical company develops a treatment for a terminal, currently-uncurable disease like Huntington's. Without your permission, they identify you as having the gene for Huntington's and pitch their drug to you.
Many people at risk of Huntington's deliberately don't test for it, bc the prognosis is so bad and it causes so much anxiety to know you have it. A marketing campaign like this -- even with a drug with marginal benefits -- could be both very profitable and devastating.
Bonus! The drug company itself wouldn't have to be the one to actually make the pitch to you. It could be a third-party pharma retailer who does it, selling the drug to you at a markup.
I can't tell if this is satire. Big pharma is going to cure my Huntington's, and they're even tell me about it before I start to lose mobility? What's the catch?
In most cases, being (truthfully) told that you have a disease and being offered a cure (at least attempted in good faith) is a good thing. Most people throughout history could only dream of something like this.
Given how insurance works, this possibility should concern people more.
Insurance is a bet. Like all gambling establishments in Las Vegas, they need to take in enough money to cover overhead, pay staff, pay off the (financial) "winners" and still turn a profit.
If your genes guarantee you X problem, it's a "sucker's bet." There's no money to be made covering you. It's effectively charity to let you buy coverage for a pittance knowing you will get a big payout.
Even if you work for an insurance company, having a genetic disorder automatically disqualifies you from purchasing a lot of their policies.
That's basically what would happen. So you would have any of the scenarios below
1. you pay higher because the info you provided them made them think that you are likely to be correlated with people that have genetic trait x which is linked to conditions w, y and z
2. you pay as normal, but when you want a payout because you suddenly have a condition for which you are genetically predisposed, you don't receive anything or receive a really small amount of money (small enough that they will make enough profit from you, but just enough that you won't sue immediately)
This is already illegal though, directly by the Genetic Information Nondiscrimination Act, which passed 420 to 12. I'm not pro DNA collection by any means but this argument gets tossed around a lot and it's clearly undesirable to everybody, and we can change/set laws to prohibit it.
It doesn’t have to be to someone’s detriment - it can just be unethical. The obvious agenda here is for a private company to use DNA data sets to develop/streamline drugs and profit handsomely (or write off any losses on their taxes). To me it is offensive that as a society we tolerate shit like this, but maybe I’m an outlier. Though, like most other commenters, I don’t see how anyone who signed up for this service did not see this coming.
1. they sell to insurance companies, insurance companies charge you a premium (obvs the dna profiling would be too blatant but it would happen, the money is wayyy too good to leave it on the table and any company that doesn't loses in the long run other things being equal)
2. big pharma knows you (where you just means people that are likely to be genetically similar to you) are likely to have x medical condition in the future, they relay this information to a third party, third party spams with you ads telling you to get check for x for free if you sign up for drug subscription that is highly marked up
I thought of these in 5 minutes. Now I imagine how many opportunities could be devised by thousands of highly experienced medical sale/marketing folks between now and anytime afterwards.
You have to understand, that your dna is like a video record of your potential present and your potential future, and just like video records are highly valuable, the same happens with your dna
Terr_|2 years ago
1. Something that would normally be your own secret to control which is used against you, like discovering you're suddenly un-insurable for condition X that you might not even have known you could get. Other variations in the space include embarrassment/blackmail or aggressive marketing.
2. Exploitation without "fair" compensation, such as if your family has a history of a certain expensive health problem and it turns out those genes are also the key to making an unrelated Miracle Cure, but none of that makes its way back to compensate people for the suffering/cost that enabled the benefit to everyone else.
3. Re-sharing with governments or law-enforcement, bypassing other rights/protections you would normally have.
lend000|2 years ago
2. This is a dramatic overreach of intellectual property. I put in no effort to create my genes and certainly should not be able to withhold certain beneficial amino acid sequences from being used by others simply because I exist. Not to mention the fact that the same gene is probably present in millions of people. Clearly I am not going to do the work to monetize some gene and help save people, so the people who do the actual work should be able to profit from it (unless you think it's better if people who could benefit from it just die). Fair compensation is zero; any finder's fee awarded in such an unlikely technical scenario would be gratuitous.
3. Governments already have this as soon as 23-and-me exists. Whether or not the data was for sale is irrelevant to Uncle Sam.
teachrdan|2 years ago
A pharmaceutical company develops a treatment for a terminal, currently-uncurable disease like Huntington's. Without your permission, they identify you as having the gene for Huntington's and pitch their drug to you.
Many people at risk of Huntington's deliberately don't test for it, bc the prognosis is so bad and it causes so much anxiety to know you have it. A marketing campaign like this -- even with a drug with marginal benefits -- could be both very profitable and devastating.
Bonus! The drug company itself wouldn't have to be the one to actually make the pitch to you. It could be a third-party pharma retailer who does it, selling the drug to you at a markup.
lend000|2 years ago
golergka|2 years ago
taneq|2 years ago
DoreenMichele|2 years ago
Insurance is a bet. Like all gambling establishments in Las Vegas, they need to take in enough money to cover overhead, pay staff, pay off the (financial) "winners" and still turn a profit.
If your genes guarantee you X problem, it's a "sucker's bet." There's no money to be made covering you. It's effectively charity to let you buy coverage for a pittance knowing you will get a big payout.
Even if you work for an insurance company, having a genetic disorder automatically disqualifies you from purchasing a lot of their policies.
bossyTeacher|2 years ago
1. you pay higher because the info you provided them made them think that you are likely to be correlated with people that have genetic trait x which is linked to conditions w, y and z
2. you pay as normal, but when you want a payout because you suddenly have a condition for which you are genetically predisposed, you don't receive anything or receive a really small amount of money (small enough that they will make enough profit from you, but just enough that you won't sue immediately)
tylergetsay|2 years ago
Fezzik|2 years ago
bossyTeacher|2 years ago
2. big pharma knows you (where you just means people that are likely to be genetically similar to you) are likely to have x medical condition in the future, they relay this information to a third party, third party spams with you ads telling you to get check for x for free if you sign up for drug subscription that is highly marked up
I thought of these in 5 minutes. Now I imagine how many opportunities could be devised by thousands of highly experienced medical sale/marketing folks between now and anytime afterwards.
You have to understand, that your dna is like a video record of your potential present and your potential future, and just like video records are highly valuable, the same happens with your dna
adastra22|2 years ago