Just like the ideal political candidate to vote for generally does not exist for anyone, the ideal company with perfect stances and behavior on everything generally does not exist.
So yes, scale back your purchasing, but as you said: the options are limited, just like political candidates. Choose who matches up best with you, support them, but unlike your relationship to Apple, political participation has a VERY different piece.
You can't just show up and start influencing policy at Apple headquarters.
But you CAN just show up to some local organizing meetings of local grassroots organizations and political parties and influence things. You can have a direct impact, and these groups are usually small enough with few enough participants in your town that you WILL have a decent impact.
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If you're not in step with where you're at, and you can find other employment where you'll be happier, why not change?
You could apply your same logic to, "If you're in a relationship with a significant other, don't break up with them... get them to break up with you! You will absolve yourself of any regrets of dumping them." Yes, and you will have wasted both your time, and their time.
And the same goes for working at a company that you feel isn't good for you.
The scenario that comes to my mind is: these chips had a lot of potential customers 30 years ago, and now may be down to just one or two customers left buying too few units to make it worthwhile.
Presumably, they have "guaranteed" buyers but also, if so, why would Airbus have issues sourcing CPUs, for example?
But no one is producing 286 chips anymore, that's part of the problem Boing has. The chips fail, because they are used and old. Or is someone besides Intel making them?
If the chips are cheap and easily available, and you know their failure modes, and they've been field tested for decades, why change?
It's very different from many software development attitudes, but remember that airframe manufacturers and avionics companies employ many people just to calculate risk and failure rates. The failure rates of these things are critical to the safety of your airframe.
What part of this discovery was made thanks to NIH and/or NSF funding from the USA, or the NIHR in the UK?
I don't ask to strictly bring up politics, but instead to try and address the broad lack of understanding of how medical breakthroughs like this are made.
It's not done just by drug companies. The article says:
> UniQure says it will apply for a licence in the US in the first quarter of 2026 with the aim of launching the drug later that year.
That's true, but that doesn't talk about the tens to hundreds of research papers that have been published over likely decades to make this discovery a reality. And it doesn't talk about how much public money went into this discovery.
Many people reading this article probably have a vague idea that more than just this company was involved, but I feel it is not at all clear to the vast majority of people, since the vast majority of people are not involved in biomedical research.
I wish there was an easy way to figure out how many dollars, how many grants, how many researchers, went into achieving this breakthrough. And that the media would put that into news articles like this. Trace all the citations back a few orders, and I bet you'll find a massive number of NIH and NIHR grants.
There is unfortunately not more massive, bipartisan public outcry in the US over defunding the essential basic research the NIH does... and it's not new to the current administration, since it was attempted to be done back in 2017, too [1].
Scientists need better messaging or else we're going to stop having breakthroughs like this... and the breakthroughs are already going to slow down thanks to things like the $783 million in cuts to NIH grants that the US SCOTUS authorized in August [2].
The problem is the soundbite of some of these studies on the surface is ridiculous to lay people but even good studies with bad sound bites are used as weapons against science funding in the USA. The shrimp on a treadmill study is still used as argument against science funding today.
https://www.npr.org/2011/08/23/139852035/shrimp-on-a-treadmi...
> Scientists need better messaging or else we're going to stop having breakthroughs like this
Sure, but it's really sad that scientists need to justify their funding to the public - they already spend so much time justifying it to the NIH and others for funding.
So many people have had their careers jeopardized by finding pulled mid-project. I am really concerned about our research pipeline, because my post-doc friends are all applying to jobs outside the US now.
This is where the funders really ought to step up.
A spokesperson from (say) NINDS really ought to be shouting to anyone who will listen about how excited they are to see their <many year>, <many dollar> investment in Huntington's pay off.
I'd love it if they highlighted some of the especially "weird" studies that went into this to demonstrate how important fundamental research is and how it goes in unexpected directions.
> it's really sad that scientists need to justify their funding to the public
The (mostly American) public pays their salaries; it's not that odd. The public elect the government (mostly the US government) that distributes the funds. The US voter in general has just got tired of living in the "worst place in the world" while also funding the majority of the world's science and health breakthroughs, I think.
We are rapidly and increasingly falling behind at least two other nations in terms of science and health breakthroughs.
The things that make the US seem like the worst place in the world are mostly a result of political gridlock, which is advantageous (in the short term) for a small group of people who thrive under the status quo, who do everything possible with their outsized power to manipulate the electorate to keep it that way, out of cowardice.
The US voter in general has been horribly misinformed, misled and manipulated into supporting things that are both against their own personal interest and against the greater good for the country as a whole.
I don't know how to fix this, but I personally don't think making grand proclamations about how great we are/were while pointing blame fingers around to obfuscate the more obvious reasons for the average citizen's discontent is a smart or ethical way to approach the situation.
> We are rapidly and increasingly falling behind at least two other nations in terms of science and health breakthroughs.
Perhaps you are, but I'm not convinced. What's the metric?
> The things that make the US seem like the worst place in the world are mostly a result of political gridlock, which is advantageous (in the short term) for a small group of people who thrive under the status quo, who do everything possible with their outsized power to manipulate the electorate to keep it that way, out of cowardice.
The political lines are clear. You can see endless interviews with kids on college campuses who've been indoctrinated to believe the silliest things. That America is the worst, most racist and sexist place in the whole world.
> The US voter in general has been horribly misinformed, misled and manipulated into supporting things that are both against their own personal interest and against the greater good for the country as a whole.
This seems a tad myopic itself. While I agree people are being misled, I would count both you and I as "people" in that regard, and equally not knowing what's best for everyone. If we did, we could just be the only two voters and it would all be perfect.
> I don't know how to fix this, but I personally don't think making grand proclamations about how great we are/were while pointing blame fingers around to obfuscate the more obvious reasons for the average citizen's discontent is a smart or ethical way to approach the situation.
No idea what this means, as there were no grand proclamations previously mentioned.
I think part of the problem is America can do huge numbers of things right, and carry quite a lot of the advances that help the whole world on its taxpayers' backs, but still be mostly criticised and teased as a country from the citizens of other, generally older, now less high achieving countries. Who only acknowledge those massive, ground-breaking contributions when they are withdrawn and can be used to complain about the USA.
Every base commander regularly meets with their Public Affairs personnel and will often attend public events in the local region their base is in. The funding is not directly tied to their public perception, sure, but there is a causal chain that every O-6 and above is well aware of.
> No, it's not sad that you need to justify the use of public money.
You don't ask your plumber which computer network you should build for a fortune 500 company for the same reason I don't ask a computer programmer how to fix leaky pipes. People who study in an area actually have much stronger basis for having opinions rather than keyboard warriors who are upset that there mythological studies have been debunked time and time again. That's not science that is cult behavior. If you want to influence that decision process work in that field and provide justifications for that vaccine research and some new angle that's been missed. The American public is not a intelligent member of the medical community there opinion should not have the same weight in day to day operations as the medical community. They can allocate an amount we want to do research and should ask the NIH to do board research because that is effective and has an overwhelmingly strong record having done the background research for basically ever medical advancement made for a long long time.
So, no I think we should allow a panel of experts to evaluate what is worth funding in research. Give the NIH a budget to hire a panel of field experts like they have been for a long time and fund research that panel says is worth it. Autism and vaccine linkage is studied and has been shown several times to have no strong correlation with vaccination. The idea we need to study that more is stupid and experts say it is stupid because it steals funding from actual research into other environmental factors that haven't been studied yet. Maybe its PFAS chemicals maybe its something else.
That's a fantastic way to fall victim to grift. Your "panel of experts" can easily be as biased as anyone else.
When you give people vast authority on the basis of their expertise (even assuming the expertise is genuine), anything that challenges it becomes not a novel idea worth exploring, but a direct challenge to their authority.
Planck's principle- that science advances one funeral at a time- is rather apropos here.
We even do not need to calculate NIH grants; I am pretty sure that all databases that were used here are from NCBI. If there were no NIH, all research would be impossible in modern biology.
I'm pretty sure some of it is direct funding by governmental agencies, but even if that wasn't the case, all the basis of the theory, and the groundwork was laid by researchers and universities using those grants. You need public money for a healthy society
I think it is a UK study. It actually has been going on for a number of years, I've seen one of the PIs giving a number of big conference talks (Tabrizi) for a while
There's little money to be made with HD. It's a 1 in 30,000 disease. There's been little reason for anyone other than state sponsors to support its treatment. Add this to the reason's to be disgusted by capitalism. Spoken as a widower of an HD wife.
I do research into neonatal diabetes, which is a 1 in 100,000 genetic disease. We're entirely state and charity funded. We have had a grant for many years to do genetic analysis on anyone from around the world who fits the criteria (diabetes under six months age) and who can send in a blood or DNA sample. It's a good model, and now more than 90% of patients with neonatal diabetes get their genetic diagnosis.
How common a disease is doesn't have much to do with treatment efforts. Cystic Fibrosis has practically been cured by Big Pharma and only ~40,000 people in the entire US have it.
That is because the Cystic Fibrosis foundation funded some of the research and drug development to make the first treatment possible. They had to essentially operate in a VC model to get the treatments that these CF patients need.
Most disease categories have advocacy and funding groups, with varying amounts of success. The point is that rare diseases get new treatments all the time from private for-profit firms. In fact, orphan diseases are extremely profitable, and the FDA offers fast tracked approval decisions, making them an enticing niche to focus on.
I'm sorry for your loss, I can only imagine how difficult it must feel to face a disease with so few treatment options
I just would like to say that it's not capitalism that decides if money is invested in a disease or another but just the individuals operating freely in the market. On the other hand Capitalism has been actually the main driver for the massive investments that enable the expensive research in biomedical topics.
It’s unfortunately normal that conditions with very low prevalence, receive less private investment than diseases that affect millions of people. That’s not because of a moral failing of capitalism, but a result of free market and the free decision of the population on where to allocate their resources. Imposing anything else on people would actually be the real moral failing, because what is the right allocation of resources between technological development, investments about hunger, medical development or just leisure? Let each individual decide for themselves and of course feel free to convince anyone to invest in what you consider priority.
So I think the fairest system is the one where individuals remain free to choose how to invest their time and money, while society as a whole can still decide, for example through philanthropy, to give extra support to areas some areas like rare diseases.
Said that, if you know of any organization supporting HD research that deserves any type of donation please let us know here so we can support it voluntarily.
It really has nothing to do with capitalism. There are special grants in the US for researching rare diseases, specifically to ensure money isn't the barrier.
As an aside because I'm pedantic about the language, apostrophes are never used to show pluralism.
I am scared that special grants to research rare diseases will go away, too.
If we're trying to figure out what the most benefit for each taxpayer dollar is, then a rare disease won't win out over, say, cancer research.
Someone may consider researching a rare disease as "waste," even though to everyone including the previous poster who is a widow because of HD, it is far from a waste.
When there is not much of a profit motive to do something - whether going to the moon or fighting a rare disease - public money is the best way to do it. And even throwing a fairly small percentage at it can create big achievements.
And that's one reason I'd like to see how much money and time went into this. We might be surprised that it's fairly small in the grand scheme of biomedical research costs!
Even that quote is a bit of a disservice to modern science: it's a massive pyramid made of thousands and thousands of individual contributions, including many bits of deep background and outright "failures".
Biology is tough in that you can't just "reason" your way to success; it often really does require trying something to see if an approach works.
Not every company can be an expert at everything.
But perhaps many of us could buy a different CDN than the major players if we want to reduce the likelihood of mass outages like this though.