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)
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.
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.
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.
And God forbid you object to the side effects or quality of life this gets you.
Sure, an expensive drug to correct some issue with a protein is not the ideal solution, but it's just bizarre to cast something that represents tremendous progress as some kind of novel evil.
That's the equation for big pharma. Now tell me you don't see a problem with this.
If you don't, I will help, a treatment is more profitable. And you know what's even more profitable? Knowing that someone might need your treatment in the near future or far future. Because you can extract even more profit from the person.
Yes, this means that you would get screened early but it also means that your healthcare costs would be much higher compared to now where most people (apart from US) only experience healthcare costs when they become old. Business models for early payment of potential treatments to offset the costs (don;t think hn crowd, think real people with real, see low, salaries) would likely become a reality. Now imagine being super healthy but 1/3 of your salary goes out to accommodation costs and another 1.5/3 goes to this futurist version of healthcare. It would absolutely devastate most people. Remember most people don't make the high salaries most HN folks make, they live paycheck to paycheck with barely enough to make ends meet.
At this point, what's the point of working in cures when treatments are much better? This is like academics only working on original research, gets you a field where most of the studies cannot be replicated
The solution that's better is "Actually get me healthy."
And once they have an expensive drug alleviating some of your symptoms while making them stinking rich, you are supposed to quit your bitching and be glad you aren't dead.
Instead, the current state of affairs (where they make a bunch of money off you) is a sort of local maximum and there is very little incentive to research a genuine cure unless such a thing would be more profitable than present day.
In a just world - not the one we live in - medicine would be produced like every other bulk molecule, because that's really what it is. Insulin could cost ~ what you pay for some other complex chemical. But because of patents and various graft protecting industry practices depending on where you live you may be overpaying by many orders of magnitude for something that could be quite cheap.
"they treat you forever" well I certainly hope so, given the alternative is snuffing out
(yes yes I'll be the ones to agree that companies and researchers can be hard headed sometimes, but that's not why diseases go uncured - life and biology is not a tiktok video)
In many countries this is a genuine concern I guess. Even in multiple European countries with great healthcare and (nearly) free health insurance, "novel" (and often very expensive) treatments are not always covered.
Look at HIV medications. It used to cost hundreds of thousands of dollars to stay afloat in the 90's, when the drugs were cutting edge.
Fast forward 30 years, and you can find generic antivirals for $110/month. As patents expire, medicines become more affordable. HIV is slowly approaching "cured disease" status in the western world for new infections, and is an increasingly manageable disease for existing infections.
It's better that some people could get the drug in the early days, funding the research that would save millions in the coming generation, even if others couldn't afford it.
The logic in this thread is just flummoxing. So many people irrationally hate companies that make lots of money so vehemently, even if the companies profit by saving lives that would be guaranteed to suffer/die without that company's profit-seeking efforts.
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.
Someone even more cynical than me.
/Still naive after all these years.
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)
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