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Couple pay >$800k for a gene-editing therapy for their daughter. She died.

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Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#231
post #86

Earlier quoted context omitted.

The problem is, how do you know when to advocate for yourself? I have zero idea if what the doctor is telling me is accurate or not. I'm not a doctor. This is why people are moving away from main stream medicine, in my opinion.

"do your own research" may get mocked, but it's often the best strategy. You just have to make sure it's the right place, professional guidelines, pubmed, and anyone referencing those is usually best. A good doctor won't have issues discussing something from that kind of source.

Also, research yourself and all the ways that you differ from the norm. Medicine makes its recommendations based on a standard patient, and knowing the ways in which you are not a standard patient and ensuring your doctors have this information is important.

For example, I have very weird/non standard genetics when it comes to processing medications, so I've had to learn which classes of drugs I need very small doses of or that I can't take at all. (Some drug classes aren't made in small enough doses for me to take safely). So I have to relay this to doctors and we make our medication decisions accordingly.

Or if you run hot or cold. My body temperature is usually a ~ 96.5, so I'm feeling awful by the time my temp hits 99.5, even though that doesn't register as a problem generally.

Or how I pushed to get a mammogram covered before it is ordinarily because my mother, grandmother, and great-grandmother have all had 3+ rounds of triple-negative breast cancer even though they don't have the BRCA genes: the standard recommendation doesn't fit our family and I am high risk despite not having the standard markers for being so.

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#232
post #86

Earlier quoted context omitted.

The problem is, how do you know when to advocate for yourself? I have zero idea if what the doctor is telling me is accurate or not. I'm not a doctor. This is why people are moving away from main stream medicine, in my opinion.

"do your own research" may get mocked, but it's often the best strategy. You just have to make sure it's the right place, professional guidelines, pubmed, and anyone referencing those is usually best. A good doctor won't have issues discussing something from that kind of source.

'get a 2nd opinion" is doing that kind of research, and has been guidance for years

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#233
post #210

Earlier quoted context omitted.

It’s called long form feature writing. Many, many people enjoy it and do not want it exterminated. It’s a way to humanize and add emotion to complex topics. If you want, many outlets have bland straightforward bullet point articles. Try Axios. Reading articles posted on HN is optional as are most things on the internet. If you don’t like the style in the first paragraph, stop reading. Getting fewer eyeballs on an art…

But it's hallucinated slop? (by a human) Is this literally true "bouncing along in a pink jacket and blue pants decorated with cartoon bears"? or just what the author thought the scene could have looked like?

Not having witnessed it personally does not make it hallucinated slop. Journalists very often write about things they were told happened, and are believable. Most likely the parents told the writer, or showed them a picture.

On top of that Science is a reputable publication. They have fact checkers on staff. For a sensitive article like this it would have been independently gone over with a fine tooth comb. The fact checker will have seen a photo, or spoken directly with the family. This is all standard stuff in high level journalism like this.

There are journalism 101 courses you can audit to learn more about features, fact checking and how all this works. It seems like it would go a long way in improving your knowledge. Things like accusing journalists of fabricating things is a VERY serious accusation in that world. The writer is not going to make up the lede in a Science article on something that could be easily refuted by the parents and ruin their entire career.

It’s ok to not like feature writing or be ignorant of its existence and how it gets made. Calling for extermination and characterizing it as hallucinated slop with no evidence out of that ignorance is strangely aggressive.

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#234

Earlier quoted context omitted.

This is what happens when healthcare is for profit.

The UK has healthcare for profit, and not just the private healthcare options like BUPA -- GP surgeries are privately owned. Does it happen there?

I live in Panama and yes it happens in for profit healthcare.

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#235

Earlier quoted context omitted.

The part about gifts he received from the father in person is particularly vile.

I think it's a part of the culture of guanxi (relations) in China.

Good point

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#236
post #222

Earlier quoted context omitted.

> 99% of the never cared to understand biology before they started Medical school. They are only in for the $$$ and status This is a very cynical take on the subject and I can’t imagine it’s backed by any data. As a retired medical doctor, my observation differs; idealism and curiosity appear to me far more common among medical trainees than you give credit. I spent my entire career in teaching hospitals. I do despis…

>This is a very cynical take on the subject and I can’t imagine it’s backed by any data. Imagine if being a doctor did not pay as well. Imagine it only pays just enough to sustain a small family. What percentage of your trainees do you think would remain in the course, for the love of the trade?

Most would. US is different because of the cost of school.

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#237
In the West medical procedures and therapies remain under the most conservative restrictions, which on one side saves lives due to potential failures, on the other it slows progression and innovation. We keep error type I extremely low. It seems China doesn't hold such a tradition and is unjustifiably daring. I don't doubt how COVID escaped.

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#238
post #86

Many years ago I was attending pre-surgery for a hip replacement surgery for my sister, who had known severe reactions to anesthesia (actually required a tracheotomy for a previous reaction). The anesthesiologist asked to speak to us privately and informed us that in their opinion, my sister had maybe a 1/3 chance of not surviving the surgery. They also mentioned that this was a breach of protocol and they could get…

The problem is, how do you know when to advocate for yourself? I have zero idea if what the doctor is telling me is accurate or not. I'm not a doctor. This is why people are moving away from main stream medicine, in my opinion.

You supply it to an LLM, I suppose. In my case, both my parents are surgeons so I have a highly aligned information source but with the most modern LLMs and good prompting discipline (you have to be good about encouraging anti-sycophancy etc) I get high concordance.

My dad enjoys seeing if the chatbots can diagnose odd stuff and they do very well to his great delight.

I will warn you, though, that if you’re a poor user of LLMs you will get bad results so don’t do this if you can’t prompt any frontier chatbot appropriately.

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#239
post #56

Earlier quoted context omitted.

I didn't read it as making the doctor a monster. What I saw in the story is an example of how the road to hell is paved with good intentions.

He's pretty clearly a monster or at least monster adjacent. He and his team * Took hundreds of thousands of dollars under the table to develop the treatment * Neglected to take steps that would determine whether the treatment was safe to use on humans * Didn't inform the family that the treatment could possibly kill their daughter * After the treatment did kill their daughter, he published the study anyway except str…

What makes someone a monster in my book is their willingness to depersonalize other people to accomplish their goals. I haven't met Qiu and this is the only article I've read about him. What I think is that he did something really horrible. But was it because he was racing to be first, damn the risks, or did he really believe that his gene therapy would work based on the evidence he had?

A lot of institutional review and peer review is in place to prevent people from making mistakes like believing that they have a powerful, low-risk gene editing technique and that they can simply apply it at will. The most generous interpretation is that Qiu really thought he could do it, and that even if the side effects happened that he would be able to control them and save the daughter.

Re: Couple pay >$800k for a gene-editing therapy for their daughter. She died.

#240
post #198

Earlier quoted context omitted.

They actually don't call them doctor, because the lowest grade in medical school is an F and plenty of wannabe doctors flunk out every year.

"What do you call the person who graduated bottom of their class in medical school?" (At least that's how I've heard it phrased before.)

A passing grade in a U.S. medical school is a 70% and they don't grade on a curve.
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