Post-facto rationalization. That's something human beings are good at. If you decide to do research in a specific field, you'll come up with hundred ways to justify why that research is important, if not the most important.
I have been listening to Ravikant Kisana the last couple of days. In the podcast episode about Chandrayaan, RK calls Chandrayaan "completely useless". A summary of the episode is the description of the episode: "Buffalo wonders what the Chandrayaan benefits are, while pondering over the crumbling education system. We take a moment to acknowledge the hot mess that is Gen Z."
Palani Kumar makes a very similar point in the talk about manual scavenging in CMC Vellore. "We have too much technology, we have lots of technology, we went to moon also, the other side of the moon, we haven't saved anyone's life among manual scavenging people".
I'm part of Sarvatrika Arogya Andolana - Karnataka which makes the consistent demand that we need to put more money into primary healthcare and have free medicines in government hospitals and so on.
That's the context in which I come across this thread by Nandita Jayaraj about a couple of breakthrough researches. Before I finished reading the thread I tweeted about it:
"Reading this thread made me think about how scientists in their lab coat are viewed in a very neutral or positive way by me whereas some of them are quite cunning and will do anything to get funded.
There are so many scientists hyping up rare diseases because that is where they get money to play with genes."
It is easy to argue with me by saying that universities are important and they create safe space for learning and that I can reject universities because of my privileges, and so on. But my intense hatred for universities has been validated by Ravikant Kisana in the Mind Your Buffalo podcast about institutional murders. The universities and the academia and the intellectual elite of this country are indeed a big part of the problem.
And that's where I come from. A position of intense hatred for scientists for their ignorance of how they're part of the problem.
And then these people who are held in high regard, in general, by journalists, people, and everyone, talk about research. From their pure and apolitical viewpoints. All I can hear when they open their mouth is "I want money. I am so smart. I do the most important work on Earth. Give me money."
Let us set all of that aside and look at this question "objectively". Isn't this sort of a trolley problem? You're forced to choose between space science and sanitation technology. You're forced to choose between rare diseases and common diseases.
One could say "let us put some money in everything" because that's one way of thinking about it.
One could also think in purely utilitarian ways and calculate the cost (somehow) of each and measure benefit and do some kind of optimization.
One could operate purely on empathy. But that has its own problems (Malayalam talk).
Anyhow, answering this question is very hard. But it is indeed possible to look at it from a lens of caste, privilege, etc as seen above in RK's podcast.
One commonly used justification is that put together rare diseases account for let's say 100 million people in India. If so, it's a large number, right? But then, what does it mean to fund research for this?
Nandita ends the thread with a link to this recent article, about incentives to study rare diseases. It heavily relies on a scientists work on "Gaucher disease, an inherited metabolic disorder affecting 1 in 57,000 people worldwide. It has also been reported in India."
As per this page on NIH's website they spent $3,211,711 in 2022 financial year for that work on Gaucher's disease. That's about 26 crore INR. In 2023, it was $2,714,052. And on this page you see the history of funding from 1988 reaching 7 figures USD every year.
Another justification (and one used throughout these fund proposals of Ellen Sidransky) is that "research into rare disorders must be supported because it can lead to insights for the wider population".
Now, this is a common justification as well. That space research leads to very many discoveries that can help with many other things.
"But most space programmes are designed to get satellites into Earth’s orbit for the sake of better communications, mapping, weather observation or military capacity at home. These bring direct benefits to ordinary people. Take one recent example: a fierce cyclone that hit India’s east coast last month killed few, whereas a similar-strength one in the same spot, in 1999, killed over 10,000. One reason for the improvement was that Indian weather satellites helped to make possible far more accurate predictions of where and when the storm would hit. Otherwise, improved data on monsoon rains, or generally shifting weather patterns, can help even the poorest farmers have a better idea of when to plant crops." ~The Economist
Somehow when I look at these arguments, I can't unsee the intentionally placed lab coats. I know a lab head whom I had never seen in a lab coat, appear in a lab coat for a video made for funders. The justifications seem post-facto rationalization. The desire to help people seem like desire to help oneself.
Of course, the sane argument here is to say we need to take money out of Adani and Ambani and put it in healthcare. But I feel it is important to also call out scientists on their inflated sense of self-worth.
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