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Eye Experts Around The World Question Experiment On Babies In China Involving UCSD Researchers

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Twenty-one researchers from the University of California San Diego were involved in a study performed on babies in China that has been called unethical, risky and misleading. Experts say the experiment likely would not have passed an ethics review in the United States.

Speaker 1: 00:00 21 researchers from UC San Diego were involved in a study performed on babies in China that has been called on ethical, risky and misleading. I knew source investigative reporter Jill Castalano has the story.

Speaker 2: 00:14 In 2016 a team of researchers from UC San Diego and China published a landmark paper in nature, one of the most high profile scientific journals in the world.

Speaker 1: 00:25 So what I show you today is a remarkable transformation of how we think about regeneration and repair our own tissue.

Speaker 2: 00:33 That's doctor Kang Zhang describing the research to an audience two years ago. John is the former chief of eye genetics at UC s d he helped design the study, which involved surgically removing the cloudy part of the eye,

Speaker 1: 00:48 so when new lens could regrow naturally, and this is again before a surgery, the eye has a cataract and after surgery is entirely clear. This is just the small incision that a little scar the patient can see very well. And the being functional very, very nicely in life.

Speaker 2: 01:04 Surgeries were tested on a dozen babies with cataracts and the researchers claim their results are much better at than what you see with current treatments.

Speaker 1: 01:12 I want to thank you. I know also thanks to chancellor for this wonderful opportunity. They'll tell you the researching my laboratory and an n and also want to thank you for your attention.

Speaker 2: 01:26 Dimitrios vulvas is an ophthalmology chair at Harvard medical school. As Volvo's read the paper, he became upset and angry. He called the study

Speaker 3: 01:36 both scientifically not sound and ethically. I'm justifiable in the u s in the world.

Speaker 2: 01:45 Vava was especially concerned that the surgeries were tested on infants in both of their eyes rather than just one. That means if the experiment went wrong, the researchers could have caused the babies to lose their vision. We are good to go. Craig Klugman is a bioethicist at DePaul University. If you do it in both eyes, the chance of having a bad outcome are increased. If you use the idea that you want to limit the amount of harm to a patient, doing it in one eye makes more sense. After this study published vulvas and more than two dozen ophthalmologists from around the world sent letters to nature about their concerns. A key point was that this new treatment did not work any better than treatments that already exist. Despite what the researchers claimed. Klugman says, having so many doctors reacted negatively to a research paper is unusual. I'd say that's not the Norman Science, and what it tells me is that there's a real concern of how this work was gone.

Speaker 2: 02:46 About an ethics review board in China approved the cataract study, but experts told I knew source the experiment probably would not have passed an ethics review in the United States. Starting in 1996 China began setting up Western style ethics review boards that approve studies in advance and can shut them down if they're dangerous. But these review boards aren't consistent, efficient, or well organized and China's standards for research ethics continue to draw criticism. The head of the summit call doctor has study irresponsible. In November, a Chinese researcher announced he had performed gene editing on human embryos, sparking international outrage. A lot has been caused, I should not have been caused. It's very disturbing. It's inappropriate. Scientists around the world worried about the potential health effects for these children and the possibility of designer babies, which would be gene edited for traits like eye and hair color. Here's Klugman again describing research in China. One of their

Speaker 4: 03:46 goals is to be, you know, the foremost scientific research country in the world and by doing that they are pushing the the edges.

Speaker 2: 03:57 John told, I knew source that he and other scientists in the cataract study went through a proper ethics review in China. He said the study was not unethical, inaccurate or misleading. UC San Diego would not respond to I. New sources. Questions for KPBS. I'm I knew source investigative reporter Jill Castillano.

Speaker 1: 04:15 Joining me is I new source reporter Brad Racino who worked with Joe Castillano on this story and Brad, welcome. Thanks Maureen. How did you see San Diego researchers get involved in this cataract study taking place in China? Do they often partner with research being conducted in other countries? Yes. Researchers often partner with collaborators both locally and internationally. It depends on usually there's a shared expertise or resources that they want to lean on each other. For doctors. Zhang actually has a lab in China as well as he had uh, employment with Ucs d. He had postdoctoral students both at UCLA and in China, so it made sense for him to work with collaborators in China as he has done before. How did you enjoy find out about the overwhelming amount of criticism that came as a response to the cataract research published in nature? In April, we published our first story on Dr Jong and as a result of that we got an unsolicited email from doctor Dimitrios at verbus at Harvard medical school who brought up this nature article, said that he and many of his colleagues had problems with it and for years have been trying to get nature to retract the article.

Speaker 1: 05:26 So Joel reached out to him, interviewed him a couple times as well as some of his colleagues, including Debra Vanderveen at Harvard and Chris Hammond at Kings College in London. Now you mentioned the previous article, Dr John has been the subject of several. I knew source investigative reports. Can you recap for us the allegations that have been made against his research ethics? Sure. So back in February or March, we had found an audit that ucs d had done on Dr Zahng several years ago. And in that audit combined with the FDA, the followup audit and inspection that occurred of Dr Zahng, there were findings that Junge had enrolled people in his studies that he shouldn't have, including a minor. He lost records for both his patients and for his study drugs. He performed tests on patients without their permission. He even poked a hole in one subjects. I and I like to clear up, these aren't actually allegations.

Speaker 1: 06:17 These are actually documented findings by ucs, D and FDA. And then after that we independently had found that Zang had many nondisclosures with both ucs d and with the research journals such as nature that he had published in. And these nondisclosures had a lot to do with his business interests abroad. And those findings actually led to zangs resignation earlier this month. Now, has there been any reason to suspect that the UC researchers partnered with this Chinese cataract experiment? Precisely because it would not be allowed in the U s we don't have evidence to support that. But the underlying thread there is something interesting and it's something that we explore in the story, which is that the, the Western world of research ethics has struggled for decades to come to an understanding with China on best practices and principles regarding research. Dr Jiang himself did state that the reason that they wanted to do this in China according to him is that, uh, it's easier to perform clinical trials on primates there, that this would cut years off the clinical trials length and that there are far fewer animal protesters in China than in the u s so it was actually easier to get through the clinical stage of primate testing to get to the human subject stage by doing it in China.

Speaker 1: 07:25 Tell us more about what you were able to find out about the ethical standards for medical research in China. Why is it that they seem to be conducting experiments more rapidly and less cautiously than other scientists? So China for most of, it's a lot of its history, you know, didn't have, wasn't, it wasn't even close to the u s in terms of research and development, uh, medical research, clinical trials, and then they'd been playing catch up over the last few decades and they've been doing it, um, very fast. In fact, there they are almost caught up to us in terms of research and development and the percentage of their GDP they spend on that. Uh, but their along with that and playing catch up and going about this as fast as they have, they've encountered a number of problems with medical research ethics, including that their institutional review boards, which are the boards that oversee human patient protection, human subject protection, they're not consistent.

Speaker 1: 08:15 They're not well organized. There is a huge problem with plagiarism among scientists in China. Um, and, and there's just an overwhelming amount of criticism among the rest of Western world as, uh, as it relates to China. So Chinese researchers in China in general are facing an uphill battle when it comes to trying to get up to par with what's happening in the u s well, critics are saying that this risky treatment on infants, the cataract treatment that you reported on didn't work any better than treatments that already exist. Dr John told you, the research quote revealed an immense potential for alleviating suffering and improving the quality of life for countless people unquote. Were you able to determine which assessment is most likely true? No, we can't really determine that as reporters. Um, you know, Giang and his collaborator, Dr Lou both stand by this research say that it has, it has been argued in nature, um, for the last couple of years and that they are right, that they have proven their point.

Speaker 1: 09:13 They're detractors, including the 20 something researchers around the world who have written in nature claimed that they are still, they are. Right. Um, so we're just here to kind of present that discussion. We're not here to pick which one is right. Dr. Young responded to your questions for this investigative report. Has he done? So for previous reports? No. It was actually a shock and a surprise for Jill to, uh, get an email from him the other day. Cause we, like you said, we've been reporting on him for months and he has not responded to anything that we've asked him a couple of times. His attorney did respond to us but not from him. So Jill actually entered into an email dialogue with him, uh, multiple questions and followups with him over the last couple of weeks where he has answered these questions. Um, very recently, this is just over this weekend. He did, uh, tend to seem to step back from the research a bit and claimed that he really didn't have much to do with the, other than analyzing the data and being the English speaking fluent counterpart for his colleagues in China. So that was interesting. But no, he has not commented. I've been speaking with I new source reporter Brad Racino. Brad. Thank you. Thank you, Maureen. You can go to, I knew research to learn more.

Speaker 5: 10:25 [inaudible].

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Maureen Cavanaugh and Jade Hindmon host KPBS Midday Edition, a daily radio news magazine keeping San Diego in the know on everything from politics to the arts.