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Edward  H Livingston, MD, FACS's avatar

Dr. Collins launched the Human Genome Project at the NIH the year after I began my faculty appointment. At the time, the belief was that so much would be learned from sequencing the human genome that many diseases would be cured, or their management be greatly improved. It was supposed to be a game changer.

The genome was sequenced but the promise that it would change the very nature of treating human disease never materialized. As it turned out, things were far more complicated than was imagined. Changes in genes could be made in various animal models and nothing happened. Few genes are so important that changing their function has a major phenotypic effect.

Nevertheless, Dr. Collins was a superstar and given control of the NIH. Being a basic scientist, he converted the NIH into a massive basic science (mostly molecular biology) shop. Clinicians and clinical experience were downgraded to the point, that in one of my last unfunded grant applications, I was referred to by an NIH study section as "just a clinician.'

Consequently, the NIH does little to support the actual practice of medicine. You can tell this by looking at clinical practice guidelines and see how many recommendations are supported by high quality (i.e., level 1 evidence). Most of what we do in clinical care is based on less than compelling research. As an exercise, I'd suggest clinicians think about something they do clinically and how NIH funding contributed to a therapeutic approach that is used.

In my field of surgery, its almost nothing. Appendectomy? One major trial funded by PCORI that confirmed what was found several years before in Finland. Hernia? I con’t think of a single NIH funded RCT that drives decision making. Cholecystitis? It’s been years since the NIH funded much research into this disease. Certainly no much we do when treating is dictated by NIH funded research. Small Bowel Obstruction-Nothing funded that I know of. The list goes on…

I used to edit a geriatric section at JAMA. It was common that when we asked authors to cite evidence supporting treatment recommendation, none existed. And geriatrics consumes most of our health care spend.

Like Vinay said, Collins had his day and made impressive discoveries. But then he was allowed to dictate the emphasis of nearly all medical research for a very long time and, in my opinion, led the NIH away from what it needed to do.

be made in various animal models and nothing happened. Few genes are so important that changing their function has a phenotypic effect.

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Michelle Enmark, DDS's avatar

And, as Vinay has said many times, how many of these NIH studies are reproducible? Agreed. Excellent comment and I appreciate hearing from an MD who is “ in the trenches “. Thanks.

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Jim Ryser's avatar

There are a very rare few in my opinion who can thrive academically AND clinically.

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Michelle Enmark, DDS's avatar

Thank goodness! And not a moment too soon, since Dr. Bhattacharya will be confirmed in a few days. Will he go to work for a pharmaceutical company?

Thanks, Vinay, for the article. I’m not hopeful that he will face any consequences for his behavior from this administration, unfortunately, and I would love to be wrong.

Yes that Puff the Magic Dragon parody was so awful and illustrative of his feelings toward the public. It made me sick to my stomach to watch it. He appears to be one of those government bureaucrats who thinks we the people are stupid, and cannot think critically or logically about anything related to science. Good riddance!

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Jim Ryser's avatar

I posted my thoughts before reading yours! 🤣

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carolyn kostopoulos's avatar

i can never forgive Collins for his appearance on the Lex Fridman podcast. he said that Joe Rogan told his followers to NOT take the "lifesaving" covid vaccine and therefore he was responsible for many deaths ("he's killing people!"). i was very disappointed that Fridman did not push back when he had to know this was a baldfaced lie. Rogan was all set to take the vaccine and had to postpone. in the meantime, he got covid and recovered in a few days, using a kitchen sink protocol (IVM, monoclonal antibodies, high dose vitamin IVs, etc. the media focused on the "horse paste" and put a yellow filter over the photos they used to make him look sick. then Sanjay Gupta came on the JRE and tried to talk him into taking the vaccine even though he had already had covid!

then he had friends who had strokes and heart attacks after getting the covid shot and decided to rely on his immune system.

i can't wait for Makary and Battacharya to join RFKjr in upsetting the apple cart!

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Michelle Enmark, DDS's avatar

Yes! I’m so ready for both of them to begin a new chapter at their respective agencies!

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Helen Reich's avatar

Regarding that pesky research grant funding issue: have we investigated how other countries do it? I can understand the problematic nature of our current system, and I wonder whether agencies in other countries have a more satisfactory method that would be worth trying.

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Michelle Enmark, DDS's avatar

Excellent question!

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Jim Ryser's avatar

So which big pharma company is he going to work at?

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MJ's avatar

Dr. Vinay Prasad, as always standing on business

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NikD's avatar

Boss man!

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J Lee MD PhD's avatar

Well, this Collins guy at NIH finally gave me the a bunch of the creeps. In particular, I think I recall him playing the "religion card" at several points during his "TV Fame" very early in the COVID pandemic. People that affect this sanctimony crap to fool rubes and hicks and yokels of our country are to be avoided if ever possible (my opinion). In sum, a smart but smarmy character, an average to barely mediocre bullshitter, definitely self-aggrandizing and unctuous, an oleaginous player. "Hand in your office keys and security badge, clear your desk, and be off Federal property within the hour".

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Edward's avatar

Collins squandered trillions of dollars. DODE ought to turn their laser on this lunatic

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Edward's avatar

In 2003, He diverted billions of dollars from the National Children’s Health Study— have squandering billions on human genome project, resulting in zippo, to jusify that waste, when he was appointed NIH, he lied to congress and pillaged funds allocated to childerns study which was huge effort to investigate soaring rates of childhood illness — he Allen Gutmacher is then fire

lieutenant. he backstabbed Duane Alexander, then director of children’s health study — just like to Jay Battercarya—collins usurps funds for idiotic “genomics” and “personalized medicine!” bamboozled everyone he was going to find each gene for each childhood illness— in two years time!!! here we are 2025! See Collins speech 2003 Smithsonian — he ends by strumming his guitar singing a ballad about DNA! he’s a friggin kook!

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Vijay Gupta's avatar

"1,000,000 lives saved from his genetics work."

That is a pretty big claim. Is there any evidence of that?

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Joseph's avatar

Well, I remember Craig Venter, using a more commercial approach, had a leg up on the publicly funded Human Genome Project, and that Venter was likely to have completed the project without the help of the NIH. But to not be outdone, NIH used public money to try to steal the glory from Venter. So, I won't even give Collins credit for that. I also recall where the NIH (Robert Gallo), tried to take all the credit for discovery of the Human Immunodeficiency Virus, until it was forced to also give credit to Luc Montagnier, from the Pasteur Institute in France, who also discovered the virus.

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Amos's avatar

What is it with all these phonies wanting the limelight? Performing on stage with their guitars, throwing out first pitches at baseball games, posing for magazine covers... they love themselves, shamelessly.

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Peter's avatar

I'm sure he meant well.

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Michelle Enmark, DDS's avatar

Are you being facetious? It’s impossible to tell from the written word. Very few if any know his true motives. Maybe they began as well meaning goals to positively impact the health of our citizens and the world? Maybe they never were noble? I’m guessing delusions of grandeur and his own importance took over as he sat in a position of power, and the gap between real patients living real lives with real loved ones in the real world and his ivory tower, grew and grew. I think eventually he completely lost sight of what is supposed to be a guiding principle in healthcare, “ First Do No Harm.” A very sad story.

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Peter's avatar

I'm being somewhat facetious.

I think you're probably right, perhaps to if he never had to do clinical work, that may explain it. But the EBM bug has caught on around the world, and a lot of people sincerely think "that's how science works".

Then of course you get the other extreme of clinicians who believe everything they do in the clinic is making their patients better because they've seen it with their own eyes.

Its strange state of affairs but it's the one we've been in for most of history save for one brief shining moment when a whole bunch of good ideas aligned a we had good empirical observation, clever RCTs, and investigators who were just so driven to find the truth. Not to mention fewer concerns around ethics and virtually zero red tape.

I think some people just believe in a sort of orderly beurocratic science. One that progresses in a neat and orderly fashion, a bit like Popper's idea, although even Popper believed in the "bold hypothesis". The last thing a beurocratic science wants to consider is that Kuhn might have made some good points.

Its almost as if some people think of the make up the rules of evidence, they can then control what counts.

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DavidS's avatar

It is never wise to create a government entity that cannot be effectively and regularly audited.

I did a lot of QA auditing and my golden rule was that wherever possible you should never set a limit, target, standard, procedure or process that can only verified by total reliance on the word of the person accountable for that measure.

Most government institutions are not very accountable and Collins exploited that weakness in the case of the NIH.

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