 Our next speaker will be Dr. John Schumann. John has been president of Oklahoma University Tulsa School of Community Medicine since 2015, and there holds the Gusman Endowed Chair in Internal Medicine. John completed the McLean Ethics Fellowship in the 2002-2003 year and then stayed on our faculty for many years. Indeed, for many years, John Schumann was the doctor to whom I signed out whenever I was out of town. And I still, I can't do it now that he's down in Oklahoma. John's scholarly work includes research and advocacy on the ethics of profit-driven commercial screening tests on social determinants of health as well as on analyses of patients that leave the hospital quote against medical advice. Dr. Schumann has authored the weekly blog Glass Hospital since 2010, a blog that aims at demystifying medicine for lay audiences. Today, John will give a talk entitled, Eugenic Shadows in the CRISPR Age. Please join me in giving a warm welcome to Dr. John Schumann. Thanks. Thank you, Mark. And it's just so great to be back in Chicago. And my thanks to Mark and Anna. And I can't believe it's the 30th year. That's really a milestone, so Mazeltov. And also, my thanks to the board and Rachel Kohler and to the associate directors of the McLean Center. So yeah, I'm going to talk a little bit just about how I came up with this topic, but that will be woven into today's talk. So yeah, I'm going to describe the scope and scale of CRISPR, but not too much. Mostly what I'm going to talk about is eugenics and then how I think there are these whispers of eugenics in CRISPR and how we have to be careful. And I think people are actually thinking a lot about this. That's kind of my conclusion. I'll tell you what the outset is that people are thinking about this avidly. So if you follow the popular press, which I do a lot, you'll see all kinds of stuff about CRISPR and gene editing technology in nearly every magazine or publication that you come across because it has truly moved from the realm of science fiction into science. And so we're just seeing headlines constantly about gene splicing, gene editing, the ability to correct hereditary diseases and conditions. But certainly there's this fear that we can make germline edits and then thus alter out of humanity really some of these genetic defects. So here's my CRISPR slide for, say it with me now, clustered, regularly interspaced, short palindromic repeats. That's what CRISPR actually stands for. It's very hard to remember. So it's easy to say CRISPR. And this one picture shows you a lot of people call CRISPR Cas9 or Cas9 the enzyme as the so-called molecular scissors that cuts out the matched sequence. But what I like to, this cartoon I like actually from Chemical and Engineering News, which I do not read regularly. But I call it the toothbrush. You can see the purple tongs of the toothbrush with kind of the squiggly line. And what that is is a segment of RNA that goes in. It has these matched base sequences that match a targeted sequence of DNA. And then the Cas9 is kind of the blue cloud around the picture that's the enzyme that allows the targeted sequence to be cleaved. And therein lies the rub. And so you're able to then actually edit out or a second step replace a segment of DNA. And that has really changed really the whole game. So like I said, a lot of people are thinking about this. And this was the National Academies put out this volume in 2017 based on a meeting that took place in 2015 in Washington. And like I said, you'll see this a lot in the popular press. So this was Joe Biden. This is from 2016 back looking at the cancer moonshot. And so there actually is, to my best of my research, one ongoing cancer clinical trial in the US. But there are many, many that are going on in China. But these were the summary of recommendations from the 2015 conference on gene editing. Essentially with some cautionary, basically that this process is OK in somatic cells. So not in, it sounds like we got that back on, in somatic cells, not in germline cells. We have to permit clinical research trials only for compelling purposes, inheritable cells. And that ongoing reassessment and public participation should precede any heritable germline editing. And then there's this whole idea of enhancement, right? So that's where you kind of get into the eugenics ideas. Well, jeez, I wouldn't mind being a little bit taller. I wouldn't mind being a lot smarter and probably being maybe slightly more athletic. So if I could just have my genes edited, wouldn't that be great? Well, it doesn't take a big leap to think of ways in which this could be used for more nefarious purposes. So this was a tweet that came out of the very recent, last month, American Society of Human Genetics, where this one scientist just tweeted what was going on, just in kind of the popular arena around genetics. And so he mentioned a senator taking a DNA test. Major parts of the United States can be under genetic surveillance via these direct to consumer tests. I think what he's referring to there is the 23andMe that was used to solve that Golden State killer crime. Well, it just so happens that this month of the McLean 30th annual conference, the second international summit on human genome editing will be taking place later this month in Hong Kong. And so registration is closing soon. So operators are standing by if you want to call. But so in other words, this is an ongoing dialogue. I guess it's at least at this first set of meetings on somewhat of a triennial basis. And so they're looking to, I guess, codify or work forward because there certainly has been a lot going on. So this is a post-doctoral fellow, Yang Yang Cheng, who works at Cornell, but he's a Chinese national. And he wrote this opinion piece in foreign policy saying China will always be bad at bioethics. And he makes the argument that culturally speaking, that Chinese have a different standard for allowing this kind of experimentation because the stigma of hereditary disease is much greater in China. And they're much more willing to take risk. Of course, in China, science that is approved by the Chinese Communist Party is considered much more valid than science that doesn't have the Communist Party seal of approval. And so therein lies how politics can often influence science. This was from this year, an article on NPR, Doctors in China, lead race to treat cancer by editing genes. And this man, his name is Xiaorong Deng. And he is getting cells, T cells actually, altered T cells to treat his esophageal cancer. This was his second treatment. And various commentators quoted in this article, said things that the investigator in China actually said that it was very easy to get approval to conduct this clinical trial. But there were some American ethical commentators saying things like, there's just so much we don't know about CRISPR technology that we really need to go slow and we're not ready for prime time yet. So this was kind of the journey of how I came to this topic. You get asked to speak pretty far in advance. And so I had just gone to, there's a museum in Tulsa called the Sherwin Miller Museum of Judaica. And they have a small sort of permanent exhibit on the Holocaust. And they had this traveling show from United States Holocaust Museum, Deadly Medicine, Creating the Master Race. And it was a fairly small exhibit because it's traveling and it goes on from place to place every month. And what really haunted me about this certainly was the history of experimentation of the Nazi doctors on unwilling subjects. But I was left with one of the final installations in the exhibit. It was about a dozen photographs of what I would call second and third tier physicians and scientists who participated in the kind of Nazi medical industry on experimentation and unwilling subjects who just kind of after World War II just sort of went back to their, you sort of know about Joseph Mengele and the notorious people who kind of fled the country and went into exile and were eventually caught and tried at the Nuremberg trials. But there were these, like I say, second and third tier scientists and doctors who just went back to the university positions in regular life. And so it sort of haunted me. And I thought about it for a long time and thought, geez, what does it mean when sort of the prevalent political ideology influences your science and you're willing to sort of be compromised? And so here's a photograph, famous photograph from the Nazi Doctors' Trial, or the so-called Nazi Doctors' Trial. So I came across this book by Carl Zimmer, who's an excellent science journalist. And it's kind of a heavy tone, but it's really very good. I'd highly recommend it. And there was this particular chapter kind of on the history of American eugenics. And it's really an idea that was sort of, I mean, it started obviously in sort of agriculture and botany and into farming. And there was, the term was actually coined in the UK by Francis Galton, who was actually Charles Darwin's cousin, who knew that, the term eugenics. And eugenics is really this idea of selecting for better offspring or making the human race more successful. And so what's interesting is the idea kind of crossed the pond and it got a strong hold here in the United States and then ultimately was adopted even after being somewhat discredited in the United States by the Nazi Party. And so I'm just going to share with you this one chapter because I thought it was so interesting. Basically there was a guide. So there was this school called the Vineland Training School in Vineland, New Jersey in the Pine Barrens that was created in the very late 1800s, almost around 1900. And it originally went by the name of the New Jersey Home for the Education and Care of Feeble-Minded Children. And it sounds so archaic and is kind of funny to us, I think, but feeble-mindedness was definitely a term that was used back then to describe people with intellectual impairments disabilities and what we would now down syndrome would be included in that category. And in this chapter he takes us through a story of a woman named Emma Wolverton who was sort of delivered, was abandoned by her family and came into the Vineland School at the age of eight. And she quickly, well a few years later, was tested by a guy named Henry Goddard, was a name that was not familiar to me. He started as the director of research at the Vineland Training School in 1906. And he was very interested early on in the merits of psychology and education. So he became an early advocate of intelligence testing. And we had no good way to test intelligence in students. And so he actually went to Europe and found out what science was going on there. And he was the first one to bring back the Bene intelligence test to the United States and translate it. And he found, and again they didn't know what the innate factors, the so-called hereditary factors of intelligence were, that could be carried on through generations or feeble-mindedness that could be carried on. That was really what they were trying to root out essentially. But the Bene test was at least useful in clustering people and was repeatable. And so he came up with this schema of feeble-mindedness. So feeble-minded people under the age of three were officially labeled as idiots. And I always knew there was some kind of history to this but I never knew this before I read this. Imbecils were those with low IQs between ages three and seven. And Goddard is actually known for creating the term moron from Greek. And morons were, it was Greek for fool. And those were people that had an intellectual age of eight to 12 and like any good medical thing it had mild, moderate and severe degrees. So in 1909 as he progressed through his research job he started to join these national committees on things like the elimination of feeble-mindedness. And he wrote a manifesto about that. And he's probably most famous or infamous for in 1912 writing a book called The Calacac Family. And Calacac was a Greek neologism that he put together. Calos meaning good and cacos meaning bad. And so it was a pseudonym of Emma Wolverton who he gave the pseudonym Deborah Calacac. And it was really a story about her family. And he had this army of researchers that went out and essentially confirmed the hypothesis that she came from a family of feeble-minded people and that had been repeated through generations. Subsequently this all was debunked. And it turned out that the research was really spurious and was eventually disavowed. But Goddard became so popular from this book which was a best seller that he went on to be hired by the New York City schools to apply the Benet testing to kids in New York City public schools. Then the United States Public Health Service hired him to then test immigrants. And the whole idea of we didn't want to let feeble-minded immigrants into the United States. And I'll just read you one thing that was kind of shocking to me was that his staff at Ellis Island broke down the results of testing by ethnic group. 79% of Italians were feeble-minded, 83% of Jews, and 87% of Russians. So here we were in theory letting all these feeble-minded immigrants into our country. And so this fed the wave of anti-immigration fervor. And all I could think was, wow, I hear these overtones of these kinds of things now. Further, he went on to test the World War I was about to start. And so the United States Army contracted with him to test soldiers. And so when he tested soldiers, 47% of white soldiers and 89% of blacks were categorized as morons. Did not speak very highly of our armed forces, but even Goddard himself criticized the methodology and went back and he loosened, he loosened the definition of feeble-minded or moron. And still then about 40% of folks in the military overall were considered to be of low intelligence. So you can see right away that the normal bell curve didn't necessarily even apply. So he went on, World War I basically abruptly ended his career, he no longer was at the Vineland School, and he wound up moving to Ohio where he worked on. He actually did some good things in his career, including advocating for individualized education programs for people with intellectual impairments. Also saying that perpetrators of crimes who had limited ability couldn't necessarily have committed their crimes in a premeditated fashion. But interestingly, while in prison in 1904, Hitler read a version of the Calacac family. And so that was kind of many people, historians think, that was where he at least fed his ideas about eugenics and the Aryan race and superiority. And it wasn't far from there to the Nazi laws on racial hygiene. So that was just all very interesting and kind of haunting. And so history always has this way of repeating itself. And I thought this certainly was a dark chapter in American history and something that we tend to gloss over or talk about the eugenics movement in very short kind of two sentence phrases. And so kind of getting into it in this sort of deeper scientific way was pretty interesting. Well now fast forward back to the future. This is an article from just a month ago in the Wall Street Journal. And this is actually about using CRISPR to gene edit different species. You can't probably see it, but this is supposed to be the passenger pigeon inside of a glass terrarium that's broken out because there's this whole, it turns out this whole movement to bring back passenger pigeons by splicing the germ cells of kind of common pigeons with DNA from passenger pigeons, from bones and other artifacts we have of them to create a new species of passenger pigeons. Same is true for the Willy mammoth. There's a whole book called Willy and George Church at Harvard, who I have a picture of here at the lower right, is very involved in this and is one of the patent holders on a lot of the CRISPR technology. Interestingly, the two most well-known scientists for CRISPR-Cas9 and inventors are on the left, Emmanuel Charpentier from France who actually works in Berlin at the Mox Planck Institute and Jennifer Doudna from Berkeley. And I think it's great that these women, and they have been foremost among calls for restraint in terms of using this new understanding, its power and limiting its use in germline technology. So again, it brings us back to today, and you can, not a day goes by where you don't see an article about, I would say in terms of the science news, the popular news about gene science or technology, but it certainly has spilled over into our politics. And so just last month when Elizabeth Warren did, used her 23andMe test to essentially, I think try to confirm that she had some Cherokee heritage, this did not go over well, really on either side of the political aisle, many Native Americans decried her attempt to do this. And certainly many scientists said that using a 23andMe to talk about your heredity is actually not the right way to do it. And then there was this story last month in the Times about how white supremacists or white nationalists are using genetics to essentially claim genetic superiority, that is by having the lactase enzyme into adulthood and the ability to drink milk. And so there are these online videos and it was in this article actually of white nationalist chugging milk, essentially saying that they're racially superior. Ironically, it turns out that that gene, when it's traced goes back to East Africa and African farmers along in Savannah. So that gene, wherever it originated from, happened to come from Africa. So I don't know if the white supremacists have their science straight, it's probably not a big surprise. But why geneticists are alarmed, it turns out that the folks at this American Society of Genetics meeting had a very hard time sort of disavowing some of this because I guess they're finding that it's hard to explain some of this science. And so they're being very reticent to try to, it's partially they don't wanna be politicized. And so this letter from Robert Pollock who is an esteemed biologist at Columbia, used to be the Dean of Columbia, wrote about eugenics lurking in the shadow of CRISPR. And this is kind of what brought it home for me was just that he essentially calls for an outright ban on germline modification, using CRISPR technology to alter the germline because we essentially don't know what we're gonna get, all of the unintended consequences. Nevertheless, and I told you that this international conference is gonna go forward later this month, I fully expect to see these things continue to progress and especially we'll continue to hear these stories of what I would hasten to say are positive stories of bringing back animals from extinction or certainly cures for uncommon diseases be they hereditary or acquired. But anyway, thank you for your attention and that was kind of my journey with one minute to go. So if you have questions, I'd be happy to answer. Well, hello, my name is Yuliang Zhao, I'm from West China Hospital. I wanna make some comments on the CRISPR technique because as you mentioned, China is playing a leading role in the CRISPR technique in treating cancers, et cetera. And one of the most very early human trial is conducted in my hospital and it is in the oncology department leading by Professor Lu You. And they use CRISPR technique to modify the immune cells and inject it back to the patients diagnosed with late-stage metastatic non-small cell lung cancer. And they claim that they were the first human trial in the world and although there is research in the States called Sean Park or some who is also intent to do this research. What I want to say is that the Chinese scientists hold a comparatively open attitude to the CRISPR technique because China has a so large cancer population and we just in bad need for new technique. But the leading university hospitals doing these kind of trials, they follow really very strict protocols which is compliant to the medical ethics principles. They register their protocols within the international registries. Actually, if I didn't remember it wrong, it's the register in American registered database. So every state, every step of their research will be under the monitor in the international standards and they follow really strict inclusion and exclusion criteria. So I think the medical ethics will not be large and I think all of us should have open attitude towards these new technologies because they will just benefit the human beings. So no matter it's USA or China. So as long as the medical issues and other things were taken good care of, we should be open to that. Thank you. So John, thanks for that talk. I just want to correct one misstatement. It's not 23andMe. Actually, it's not 23andMe that was used for the criminal investigations. It was something called GEDMATCH which you can upload your own genetic information and it specifically says, I agree it's in fine print but it specifically says this is open source and can be used by anyone, including criminal prosecutions. 23andMe and Ancestry.com do not have that. They do say that it's private and so it can't be opened and that if the police actually wanted to use 23andMe or Ancestry.com, they'd have to get a new sample, they'd have to get permission and they'd have to upload it that way. So for those of you who have put your samples up on 23andMe and Ancestry.com, it's still relatively private, private to the extent that it's been bought and sold by for-profit companies but it's not being used by the police. That is actually GEDMATCH which specifically states permission to share with everyone and anyone. Thank you for clarifying that. A lot of comments. Anyone else? Okay, thank you. Thank you.