The following is a transcript of the podcast episode:
Rachael Robertson: Hey, everybody. Welcome back to MedPod Today, the podcast series where MedPage Today reporters share deeper insights into the week’s biggest healthcare stories. I’m your host, Rachael Robertson.
First up, Kristina Fiore tells us about a rare syndrome following COVID vaccination that some are calling “long vax.” After that, I’ll share why people are talking about disgraced surgeon Paolo Macchiarini a decade after his experiments on patients first came to light. Finally, Jennifer Henderson tells us about a doctor who claims her voice was cloned by AI for an advertisement — without her consent.
Let’s get into our first story.
At MedPage Today, we’re very careful about reporting on any study that can be misrepresented if it gets into the wrong hands. And as you can imagine, that often comes up with studies that can be portrayed as anti-vaccine. But if there’s a solid study done by reputable researchers, we will often go ahead and report the story. That’s the case with a recent medRxiv paper on COVID vaccine side effects led by Harlan Krumholz, MD, at Yale. Kristina Fiore is here to tell us more.
So, Kristina, tell us about the cohort that Krumholz and his colleague Akiko Iwasaki, PhD, are evaluating here.
Kristina Fiore: Hey, Rachael. So this is the Yale LISTEN study, which is focused on trying to understand both long COVID and post-vaccination events. For this paper, the researchers surveyed 241 adults who said they had symptoms after their COVID shots. So it’s important to note that these are all self-reported data and that this is a self-selected group of people.
Robertson: Got it. Okay, so what are the main findings?
Fiore: It’s really a descriptive study. Krumholz told us it’s the largest investigation of people who say they have a chronic debilitating condition that began soon after a COVID vaccine. Now, neurologic symptoms were the most commonly reported adverse event. The top five were exercise intolerance, excessive fatigue, numbness, brain fog, and neuropathy.
Robertson: What are the researchers saying the next steps should be?
Fiore: Krumholz and his team want to do a deep dive into whether these symptoms have any correlation with actual changes in the immune systems of these patients. If they can establish some kind of relationship there — that’s a story we’d report on. For now, Krumholz says the study “raises awareness about what these individuals are experiencing and points attention to the need for more studies.”
Robertson: Awesome. Thank you, Kristina.
Fiore: Sure thing.
Robertson: So now, Kristina will actually take the host seat to ask me a few questions.
Fiore: Okay, here we go. Paolo Macchiarini used to be considered a pioneer of regenerative medicine, but now he’s known for his failed medical experiments on patients. A few pieces of media are bringing the spotlight back on Macchiarini’s missteps.
So Rachael, what was Paolo Macchiarini known for and how did he fall from grace?
Robertson: Macchiarini’s demise was quite drastic. He was associated with the Karolinska Institute in Sweden for a long time and a decade ago, he implanted several bioartificial tracheas into patients, which was a huge deal at the time. However, most of those patients are now dead.
I spoke with Stephen Badylak, PhD, MD, who’s the deputy director of the McGowan Institute for Regenerative Medicine at the University of Pittsburgh. And he told me that back then, Macchiarini was claiming that it was possible to replace diseased portions of the trachea or the major bronchi that branch from the trachea, using tissue engineering and stem cells. However, after multiple patients died, Macchiarini’s research was called into question and reporting at the time also raised the alarm about him.
Macchiarini was also the subject of season three of the hit podcast “Dr. Death,” which also got a TV adaptation that debuts on Peacock later this month. And Netflix just released a docuseries called “Bad Surgeon: Love Under the Knife” which resurfaced Macchiarini’s story. You’ve seen that right, Kristina?
Fiore: I have and I also recently caught up on “Dr. Death” season three. And what I find most fascinating is the two reporting tracks that led to Macchiarini’s undoing.
On the one hand, you have a former NBC News producer, Benita Alexander, who Macchiarini conned into a relationship. They were going to get married. But that turned out to be a facade. At the same time, journalists in Sweden were investigating whistleblower claims from other doctors at the Karolinska Institute regarding problems with his trachea surgeries.
So Benita Alexander tells all in this Vanity Fair piece, and not long after, the Swedish journalism starts coming out. And I like how in one of her interviews Benita makes a big statement about the underlying personality here. If Macchiarini is willing to con someone in his personal life, why wouldn’t he be willing to do it in his professional life? Character matters, right?
Okay, so back to your story. You talked with experts in regenerative medicine about Macchiarini’s fraud and falsehoods and how they impacted the field. Tell us about that.
Robertson: You know, the regenerative medicine experts I spoke to also raise concerns about Macchiarini’s character and his motivations. Bryon Petersen, PhD, is the director of Stem Cell Research and Hepatic Disorders and a professor of stem cell research at the University of Florida. He said that Macchiarini felt like a classic case of a doctor with a god complex. Petersen told me this:
Petersen: They’re losing the sight of the patient and focusing on the goal that gives them the accolades.
Robertson: Badylak explained that patient safety is of utmost importance. And then he told me this:
Badylak: Well, before you go into patients, you should have as much information on the benchtop or in preclinical animal studies as possible that this has a good chance of working when you take that next step into humans. And that’s where he, I believe, fell down.
Fiore: So what is Macchiarini up to now?
Robertson: In June, a Swedish court of appeals found Macchiarini guilty of gross assault and sentenced him to 2 and a half years in prison. That’s on top of another conviction of causing bodily harm from last year. He’ll likely serve about two-thirds of his sentence, but it’s unclear if that has already begun.
Fiore: Okay, interesting story. Thanks so much, Rachael.
Robertson: Thank you, Kristina. I’ll take it from here.
A Los Angeles podiatrist and social media personality says that her voice was cloned using artificial intelligence without her consent. Dana Brems, DPM, charged in an Instagram post that a company used AI to make a fake recording of her voice for an ad. MedPage Today reporter Jennifer Henderson had Brems, as well as experts in AI, weigh in on whether AI powered vocal cloning is becoming more common – and what the potential harms are.
So Jennifer, what did Brems say happened? How did she discover this issue in the first place?
Jennifer Henderson: So the ad using an AI clone of Brems’ voice appears to be for an ear-cleaning device, according to Brems’ Instagram post. The ad has Brems’ voice recommending the product — even though she didn’t say that. Brems discovered the ad via Facebook Rights Manager, which picked up the video because the first few seconds are from an ad she actually made, she told MedPage Today in an email. But the second half of the video was faked with AI, she said. She doesn’t know who made the ad or where they are based, but Brems said that both the Instagram account where she found the ad and an associated website were deleted after her post calling attention to the issue.
Robertson: I can imagine that was really jarring for Brems to find. How have other people been reacting to this?
Henderson: Social media posts from Brems regarding the ad have racked up views. In particular, many commenters pointed to the potential harms of fake health-related recommendations tied to medical professionals. Hany Farid, PhD, a professor at UC Berkeley’s School of Information, told MedPage Today in an email that the issue Brems described as not an isolated one. Farid said, “As voice cloning has improved, I’ve been seeing an increase in these types of fakes.”
Robertson: Oh my gosh. So what are some of the potential issues with these kinds of fakes?
Henderson: Ashley Hopkins, PhD, who is a senior research fellow at the College of Medicine and Public Health at Flinders University in Australia, told me in an email that deep fakes like this raise huge ethical issues. Hopkins said, “There’s an urgent need for robust regulatory frameworks to ensure AI developers implement strategies to prevent publicly accessible AI tools from facilitating such impersonations, whether it be of healthcare professionals or others.”
Brems also said she remains concerned beyond her own experience. She said that, “Once people catch on that they can use AI to impersonate doctors and other authority figures, it’s going to be a huge problem.”
Robertson: Yikes. Thank you so much for this report, Jennifer.
Henderson: Thank you, Rachael.
Robertson: And that’s it for today. If you like what you heard, leave us a review wherever you listen to podcasts, and hit subscribe if you haven’t already. Subscribing helps us bring you the news you need from people you can trust. Thank you so much for listening. We’ll see you again in two weeks.
This episode was hosted and produced by me, Rachael Robertson, with additional guest host Kristina Fiore. Sound engineering by Greg Laub. Our guests were MedPage Today reporters Kristina Fiore, Rachael Robertson, and Jennifer Henderson. Links to their stories are in the show notes. MedPod Today is a production of MedPage Today. For more information about the show, check out medpagetoday.com/podcasts.
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