Comment by SeanLuke

Abandoning one’s livelihood to spend years in poverty studying advanced science at university in the distant hope that in a few decades you might contribute to a cure is a little different from taking a few weekends, or even a few months of weekends, to scratch a programming itch.

I can't think of many people who've learned to program to fix a bug that's bothering them. and learning to program in your free time is much easier than switching careers, getting a PhD and securing funding for your lab.

nevertheless, I know a number of people with my genetic disorder (Ehlers-Danlos syndrome) who have become researchers, doctors and PTs because of it. but that's a genetic disorder, so it hits you early enough in life to sway your choice of major.

also, while I get what you're saying about having "little useful productivity left," it comes across as a bit insensitive.

We don't gatekeep tech. Literally anyone can create a PR and submit it to an open repo for consideration.

You can't do the same for biotech. You need a PhD, a reputation, a ton of funding, a bunch of papers, to be even considered for "this person has a clue about this medical issue and might have an answer".

Listening to maintainers talk about their experiences dealing with random weird PRs from random weird submitters, I'm not sure we're doing it right by not gatekeeping it more ;)

Principally barrier to entry in the field due to high costs, low iteration rate, required space, safety of operation, and poor information sharing practices in the field.

That's what I would guess. Because otherwise, there's the concerned uncle effect: unaffected agent who has close to maximal aligned incentive.

Programming is much, much easier to learn to a professional level than biochemistry, and open source is much, much cheaper and easier to enter and navigate than medical academia/pharma industry, and adding a software feature is (generally) much easier than discovering or developing a drug.

I think it’s a valid question but expectations have to be tempered by the question of how many people have the means to follow through. Not many are in a position to go (back) to school for a doctorate just to start working on the problem 5-10 years later.

Someone suffering a debilitating illness (often later in life) is probably only slightly more likely to be able to contribute useful research here than someone actually already dead.

What with them suffering the debilitating illness and all, and being well past the age where it would be natural to do a major life change like become a medical research.

You might as well be wondering why Ukraine isn’t encouraging pregnant women to go to the front. I mean, what else do they have to do?

Given the high requirements to enter the field, and a likely mismatch of interests between many of the patients and the interests required, it would probably be more effective to try to fund some researcher directly. Identify someone doing high-quality research in an adjacent area and offer a direct grant of $50k or something to research towards a cure.

Getting access to the resources required for infectious disease research without qualifications is difficult.