Opinion: On a day to celebrate the Nobel in medicine, a stain still mars the institute that awards it

As the Nobel Assembly at Sweden’s Karolinska Institute announced Monday morning that David Julius of the University of California, San Francisco, and Ardem Patapoutian of the Scripps Research Institute in La Jolla, Calif., won the 2021 Nobel Prize in medicine or physiology, the institute has yet to fully acknowledge its culpability in lethal, experimental procedures conducted by transplant surgeon Paolo Macchiarini and is still trying to discredit the four whistleblowers who exposed them.

Its actions represent a stain on the world’s most important medical research award.

Five years ago, prominent scientists such as Nobel laureate Arvid Carlsson were calling for the award to be cancelled. Their reason? A shocking series of untested procedures performed on vulnerable patients at the Karolinska Institute and elsewhere by Macchiarini, a celebrity transplant surgeon whose fraud and abuse were defended for years by prominent members of the Nobel Assembly, including its secretary-general.

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Macchiarini built his fraudulent experiments around an audacious idea: construct an artificial trachea out of plastic, seed it with a patient’s stem cells, and implant the plastic trachea into patients whose tracheas were diseased or damaged. He and his team started in 2011 with an Eritrean graduate student who had throat cancer. But they were soon putting the implants in less seriously ill patients.

Macchiarini carried out his experiment with extraordinary recklessness. He told spectacular lies and faked research results. He had little scientific evidence the implants would work, yet he began putting them in humans without even trying this approach in animals. Although a full count of Macchiarini’s victims is hard to confirm with certainty, it appears that all but one of the synthetic implant patients died, some slowly and in extraordinary pain. The sole survivor apparently had the implanted trachea removed.

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He was eventually fired in 2016.

Like everyone else at the Karolinska Institute, the whistleblowers — Karl-Henrik Grinnemo, Matthias Corbascio, Oscar Simonson, and Thomas Fux — were initially fooled by Macchiarini. Grinnemo, Corbascio, and Simonson even co-authored articles with him. But after a surgical fiasco in 2012 with Macchiarini’s third patient, a young woman from Turkey, they began to suspect that the research on which the transplants were grounded was fraudulent. After months examining hospital records and journal articles, they submitted a detailed, thoroughly documented report to the Karolinska Institute. It was ignored.

They then worked for nearly two years desperately alerting regulatory bodies, funding authorities, journal editors, and the press. Their efforts were fruitless.

An external inquiry in 2015 confirmed Macchiarini’s fraud, but leaders of the Karolinska Institute simply dismissed the result and proclaimed their continued confidence in the surgeon.

The whistleblowers were subjected to a brutal campaign of harassment and intimidation. They were threatened with dismissal. Grinnemo was falsely accused of research misconduct, derailing his research career. The Karolinska Institute’s administration even reported the whistleblowers to the police, falsely accusing them of illegally accessing hospital records.

A reprieve didn’t come until a 2016 documentary on Swedish television, “The Experiments,” exposed Macchiarini’s abuses and the institutional cover-up.

Forced to investigate the allegations of fraud, the Karolinska Institute finally conceded in 2018 that six of Macchiarini’s published articles should be retracted. But the concession came with a bizarre twist: The institute blamed the whistleblowers for complicity in Macchiarini’s scientific misconduct. Grinnemo was singled out for special blame and placed in the same category of misconduct as Macchiarini himself, despite the fact that he had helped expose the fraud, had removed his name from Macchiarini’s key paper, and had lobbied for years to have the articles retracted.

Medical research — and its oversight — is built on a foundation of trust. Patients and research subjects depend on honest witnesses to speak up when they see abuses. Yet it would be hard to come up with a more powerful way to deter witnesses to wrongdoing from coming forward than the one devised by the Karolinska Institute: blame them for complicity in the abuses they have reported.

If the rest of the research community takes its ethical cues from the Karolinska Institute, home of the Nobel Assembly, there is no doubt we will see more patients in need abused by frauds like Paolo Macchiarini, while potential whistleblowers remain silent.

Carl Elliott is a professor in the department of philosophy at the University of Minnesota and author of a forthcoming book on whistleblowing in medical research.

Source: STAT