UCare generously supports MinnPost’s Second Opinion coverage; learn why.

Documentary that exposed one of the world’s biggest medical scandals to have its U.S. premiere at the U of M

“The Experiments” is going to have its U.S. premiere this Monday, Oct. 29, at the University of Minnesota’s Coffman Memorial Union Theater.
Courtesy of the University of Minnesota
“The Experiments” is going to have its U.S. premiere this Monday, Oct. 29, at the University of Minnesota’s Coffman Memorial Union Theater.

Medicine has seen its share of research scandals, but one of the biggest and most brazen in recent years has involved the Italian transplant surgeon Paolo Macchiarini. Heralded internationally as a pioneer in regenerative medicine for his experimental work using stem cells to “seed” and create viable artificial tracheas, Macchiarini was eagerly recruited in 2010 by Sweden’s prestigious Karolinska Institute (the same institute that awards the Nobel Prize in Physiology or Medicine).

But all was not as it seemed with the institute’s new superstar, as several surgeons working with Macchiarini soon discovered. When they looked closely at the papers Macchiarini had published in medical journals — including a widely publicized one in The Lancet in 2011 — they found that he was omitting or falsifying details about the post-surgery condition of his patients. Indeed, Macchiarini made it sound as if his patients had recovered their health when, in fact, the synthetic tracheas he had implanted in their bodies did not work at all. His patients were dying, not thriving.

The surgeons put their findings into a long, whistleblowing report and gave it to the Karolinska Institute’s administrators, who promptly ignored it. Only after a leaked copy of the report made its way into a New York Times article did the administrators commission an outside expert to investigate Macchiarini’s work. In 2015, the investigator concluded that Macchiarini had, indeed, committed research fraud. Yet the administrators continued to defend their star surgeon — and threatened the whistleblowers with dismissal.

Then, in 2016, a three-part documentary, “The Experiments,” was shown on Swedish television. In unrelenting detail, the documentary unraveled — and ultimately exposed — Macchiarini’s scientific con game and the enabling role that the Karolinska Institute played in it. The reaction from the Swedish public was swift. They demanded that officials take action — and this time they did. Macchiarini was finally forced to leave the institute, as were several of the administrators who had refused to take action against him earlier.

“The Experiments” is going to have its U.S. premiere this Monday, Oct. 29, at the University of Minnesota’s Coffman Memorial Union Theater. All three parts of the documentary will be shown that night, starting at 5:30 p.m. The documentary’s director, Swedish radio and TV producer Bosse Lindquist, will be participating in a discussion after the showing. Lindquist will then return to the U of M campus the following day, Oct. 30, to be interviewed by investigative reporter and “In the Dark” podcast host Madeleine Baran. That discussion takes place at 4 p.m. at the Lindahl Founders Room at Northrup Auditorium.  Both events are free and open to the public.

MinnPost recently spoke with Lindquist about the Macchiarini scandal and the making of the “The Experiments.” An edited and condensed version of that conversation follows.

MinnPost: What made you decide to make this documentary? Did you already have a sense that there was a scandal brewing? 

Bosse Lindquist: We got tipped off by a disgruntled former professor at the Karolinksa Institute that four senior surgeons at the Karolinksa Hospital had filed a complaint against a colleague for alleged scientific fraud and for mishandling and possibly killing patients. This complaint had been leaked to an American watchdog site, Retraction Watch, and that’s how we got hold of it.

MinnPost: What did you think of the complaint?

BL: At first, I thought it was impossible that these things could have taken place in the open at the Karolinksa Institute and at the [Karolinksa] University Hospital. I mean, surgeries are performed with five, 10, 15-plus people surrounding the operating table, and permissions have to be given. I thought these things couldn’t have taken place. But then there was the fact that the leadership of the hospital and the institute had, instead of listening to the complaints, gone after the whistleblowers and had even complained [about them] to the police. That’s when I decided to try and do a documentary. I realized that either we have four senior surgeons who are completely nuts and [who] filed this untrue complaint and risked their careers and their families and everything, or we had the leadership of the best two medical institutions in Sweden doing something terribly wrong. Either way there would be a story.

MP: And Macchiarini didn’t object to your doing the documentary?

BL: I called him up and asked to interview him. He said, “Yes, as long as you don’t ask me about the complaints. You can tag along, and I’ll show you my work in Russia, Turkey,” etc. That’s how it all started.

MP: Was there a moment when you suddenly realized that the complaints against him were accurate, that he actually was committing medical fraud? 

BL: No. There were a couple of moments during that year [when I thought] wow, shit. But it was a long struggle. And, actually, many factors pointed to the whistleblowers being in the wrong and Macchiarini in the right. But the deeper we got into the background — the data from the hospital records, etc. — it gradually became clear that the four whistleblowers were totally right and Macchiarini was totally wrong. And the leadership [at the Karolinska Institute and Karolinska Hospital] was totally wrong. One of the decisive moments was when the wife of the initial patient [Andemariam Beyene, an Eritrean graduate student in geology at the University of Iceland] gave us permission to look at his [medical] records. When we saw the actual recordings from inside his throat, it became totally clear that something very, very bad had happened.

MP: You spent so much time with Macchiarini. What was your relationship with him over that year?

BL: It was really cordial. He’s a very charming man. He’s seductive, and I think he has that influence both on men and women. He’s very charismatic. He will dominate any room that he enters, [whether it’s a] a Russian underground station or a medical conference room. He’s the center of attention. So it’s fun, actually. He can be very nice. But he can also be very terribly frightening and quite aggressive. Extremely manipulative.

MP: Did you come to any conclusion about what was motivating him? It seemed at times in the documentary that he really cared about the patients. He seemed moved by them. And, yet, he then abandons them. He doesn’t follow up with them.

BL: I think that he feels that he deserves success in life and that he ultimately deserves something like a Nobel Prize or something like that. He thinks the world just hasn’t quite seen his excellence yet and that they will eventually. He believes that he’s helping mankind, and I think that he construes reality in such a way that he actually thinks that he was doing good with these patients, but that there were minor problems and stuff that sort of [tripped him up].

MP: Why do you think that the Karolinksa Institute and the hospital supported him so long? What was their motivation? 

BL: I think the hospital was afraid that if these allegations turned out to be true, they might face criminal charges for how they allowed patients to be treated. They could be sued. I think, perhaps, that the leadership of the Karolinksa Institute was afraid of tarnishing their Nobel Prize. I mean, it was the secretary of the Nobel committee who was the prime supporter of Macchiarini and who used Macchiarini as a showcase throughout all those years. They were also in very serious discussions with a Chinese tycoon at the time the four whistleblowers came with the complaint. It was a billionaire from Shanghai who had [offered] $60 million as a grant to build a Karolinksa Institute in Hong Kong, That was the biggest donation they had ever been offered, and Macchiarini was the showcase to get that donation. And there were several other big grants up for discussion, government grants. I also think they were protecting their own reputations. The leaders were so heavily involved with Macchiarini that they realized that they would fall too if he fell.

The documentary’s director, Bosse Lindquist, will be participating in a discussion after the showing.
Courtesy of the University of Minnesota
The documentary’s director, Bosse Lindquist, will be participating in a discussion after the showing.
MP: Your documentary also shows an enormous lack of accountability by medical journals. I don’t think all his papers have been retracted yet, is that correct? 

BL: That’s correct.

MP: And he even got a paper published last spring. The editor of that journal said he had no idea of Macchiarini’s past.

BL: What does that say about academia and academic policy? I assume that the paper was investigated through peer review.

MP: It was.

BL: What kind of peer review is it when they haven’t even Googled Macchiarini? If they had they would have seen this whole scandal. So, yeah, it’s a very faulty system.

MP: You don’t talk in the documentary about the untrue things Macchiarini put on his CV. There’s also all the bizarre lies he told the NBC News producer [Benita Alexander, to whom he became engaged without telling her that he already had a wife of 30 years]. How did you decide what to leave in and what to leave out?

BL: We had realized that the CV wasn’t correct. But it was sort of minor, we thought, in comparison with what he’d done to the patients and his scientific fraud. When it comes to Benita, I had no idea. I mean I knew he was engaged to this lady in the States, but Macchiarini never spoke a word of his private life. He refused. He didn’t even want to tell me where his primary schooling had taken place, or whether his parents were alive or not, or where he was born. I mean it was just a total blank. I accepted that because my job was to look at his medicine and his science and not his private life, so I left it at that. He was adamant. But then a week before we broadcast [the documentary], Vanity Fair published [an article about Macchiarini and Alexander]. I then realized it was Benita he’d been texting all those hours we’d spent together in Russia and places.

MP: But the lies on his CV speaks to the fact that the Karolinska Institute didn’t really do due diligence when they hired him. 

BL: Right. They looked at the CV but they didn’t check whether it was true. There’s sort of an honor culture — is that the English word, honor culture? — where you trust people at their word. The chairman of the board of the Karolinska Institute told me when the scandal broke, “Why should I doubt the vice chancellor that he would be in the wrong? I mean he’s a professor. He’s a man of letters. He deserves my trust.” I don’t know if it’s very different in the U.S., but I think that’s sort of par for academia — that you never ask your colleague to see his or her data. If you decide to trust them, then you trust them. Otherwise you don’t work together.

MP: What has happened to the patients. One was able to successfully have the tube removed, is that correct?

BL: Yeah. One person.

MP: And everybody else has died?

BL: Yes. And the person who is still alive, Dmitri [Onogda] from Crimea, his procedure was different from the others because they actually left bits of the original structure of the trachea in place. So they could sort of pop it out, and he still had a passage for breathing.

MP: Are the families able to sue?

BL: Yes. The Turkish young lady [Yesim Citir] who was operated on in Sweden, her relatives in Turkey have sued the U.S. manufacturer of the plastic tracheas. So there’s progress going there. And in Sweden there’s a criminal investigation ongoing. They come to a decision in November whether they’ll prosecute or not.

MP: And what about the whistleblowers? Have they been able to go back to their careers without any professional harm? 

BL: No. Two of them have had to change cities and hospitals. Two are still there, but they have been subjected to threats from management and from some of their colleagues who were involved with Macchiarini. They have not received any new grants since this whole thing happened. It’s a crying shame.

MP: That’s quite a terrible outcome, because that may stop other people from stepping forward in similar situations. 

BL: Exactly.

MP: Do you feel that everyone who was responsible for ignoring the warnings about Macchiarini has resigned or been fired? 

BL: No, no, no. A number of people are still there and have their old jobs and just carry on. Some have been forced to change jobs, to get another job — but in some other function within the hospital or in the government.

MP: Has the Karolinska Institute recovered its reputation?

BL: Not yet, no. The standing of the institute is very low in most Swedes’ eyes for the moment.

MP: What about Macchiarini? What is he doing? Have you been in touch with him? 

BL: I’m not in touch with him at the moment. My latest news about him is from June. I think he was performing surgery in Spain, Italy, Turkey. And he claimed that he was performing surgery in the U.S., which I doubt, but he claimed that.

MP: Not these same procedures.

BL: No. I don’t think he’s inserting any plastic tracheas at the moment. But he’s [apparently] doing risky, high profile operations in private clinics for high fees. I don’t know if he’s still pursuing research in Russia, but it seems as if he’s doing experimental surgery on primates.

MP: That’s the animal research he should have done to begin with, before he starting operating on patients.

BL: He should have, shouldn’t he?

MP: So what does the scandal around Macchiarini say about our leading medical and research institutions?

BL: There’s very little oversight, very little impartial control of academia and hospitals. I’m not quite sure what the situation is in the U.S. but in Sweden there is basically no one who is overseeing, for example, the Karolinksa Institute or other medical universities, and checking that they’re doing what they should do. The same thing is true with the published findings. The peer-review system obviously doesn’t work if someone is trying to cheat the system. The reviewers have too little time, far too little time, to check on what is being published. The same goes for hospitals — in Sweden at least. There’s no authority above the hospital that double-checks what’s actually going on. It’s a very old-fashioned system where there’s very little law that regulates what to do when things are not done in the right way, when somebody misbehaves this badly.

MP: But this is not just a Swedish story, is it?

BL: What is interesting about Macchiarini is not that a doctor did this in Sweden, but that he basically did the same thing in Russia, the same thing in Spain, the same thing in Italy. His methods were the same in all these different countries, and he [worked with] the same ease in all of them. He did one of the surgeries in the U.S., and I don’t think there’s been much commotion about that. A poor little toddler [Hannah Warren]. And one of the patients he experimented on in Sweden was a U.S. citizen from Baltimore [Christopher Lyles]. Macchiarini found fault lines within academia and medicine everywhere.

For more information:  You’ll find more information about the events surrounding the U of M’s screening of “The Experiments” at the Minnesota Center for the Philosophy of Science website.

Comments (1)

  1. Submitted by Paul Yochim on 10/26/2018 - 02:54 pm.

    The Karolinska Institute isn’t the Cleveland or Mayo Clinic.

Leave a Reply