70. Science, Trust, and the History of Quacks with Jenny Lange

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"Science is not objective. It is subjective. And I think having conversations about it is very important."

Dr Jenny Lange is a neuroscientist specialising in uncovering the mechanisms of rare neurological disorders. She is currently a postdoctoral fellow at the UK Dementia Research Institute, University College London. Outside the lab, Dr Lange is a public speaker and writer on medical history, the intersection of science and literature, and scientific ethics.

Things we discuss

• The history of quackery and why charlatans follow the same playbook
• Research abuses that have legitimately fueled mistrust in science
• How to practice healthy, proportional skepticism and spot the difference between real and pseudoscience

References:

• William J. A. Bailey and Radithor: https://en.wikipedia.org/wiki/William_J._A._Bailey
• The Tuskegee Syphilis Study: https://www.history.com/articles/the-infamous-40-year-tuskegee-study
• The Immortal Life of Henrietta Lacks by Rebecca Skloot: https://www.goodreads.com/book/show/6493208-the-immortal-life-of-henrietta-lacks
• Andrew Wakefield and the discredited MMR-autism study: https://en.wikipedia.org/wiki/Andrew_Wakefield
• Paolo Macchiarini trachea implant scandal: https://en.wikipedia.org/wiki/Paolo_Macchiarini
• Greenwich Skeptics in the Pub: https://www.meetup.com/greenwich-skeptics-in-the-pub/

Transcript

Welcome And Meet Dr Jenny Lange

James Hogson 0:01

Welcome to Humanism Now, a podcast about secular ethics, curiosity, and compassionate change. I'm your host, James Hodgson. Our guest today is Dr. Jenny Lange. Dr. Lange is a neuroscientist specializing in uncovering the mechanisms of rare neurological disorders. Initially en route to becoming a psychologist, Jenny became intrigued by the field of psychopharmacology and completed a PhD in neuroscience at King's College London. She's currently working as a postdoctoral fellow at the UK Dementia Research Institute, UCL. And outside of the lab, Jenny gives talks on medical history and the intersection of science, literature, and scientific ethics, as well as being a science communicator and writing for science outreach websites. Dr. Jenny Lange, thank you so much for joining us on Humanism Now.

Jenny Lange 0:47

Thank you for having me.

Ethics of Science and Quackery

James Hogson 0:49

I'd love to find out more about the topics of your PhD and your studies, but the reason for inviting you on to the podcast today is I'd recently heard a talk which you had given with the Greenwich Skeptics in the pub, which I thought was very aligned with what we like to talk about here at Humanism Now on skepticism, science, and as you mentioned, the history, not only of medicine, but also of those pretending to be active in medicine, let's put it that way. So I think to start us off, could you perhaps introduce our audience? How did you become interested in science, the ethics of science, and particularly these questions around quackery, which I'd heard you discuss?

Jenny Lange 1:28

So, like you mentioned, I was already originally studying psychology. And I think during my psychology degree, we kind of went a bit more into the history of experiments. Because when you're discussing psychological studies, especially like things like Zimbabwe's prison experiment, you get a history and we discuss ethics, and it's got a big aspect of critical thinking. And I did really enjoy that. And then I went into neuroscience, and that obviously focuses very heavily on biology. And we don't learn about the history of these experiments. And I started giving talks for Langman of the Dead in, I think, oh gosh, 2022, and looking at the intersection of Gothic literature and science. And obviously, one of the most pervasive tropes is that of the mad scientist. And that kind of intrigued me, you know, more of the history of science. Like who are the people behind these discoveries that are the foundation for my research today? Who did great research? Who did very questionable research? And that kind of history is very, very fascinating to me.

James Hogson 2:44

And so, yes, you've given talks on both bad science and then also charlatans and quackery. I wonder, do you see similarities in the way in which potential scientists go around conducting bad or immoral science with those who, as we were saying, are, I guess, more pretending in the space?

Jenny Lange 3:02

Yes, in a way, because sometimes both can come from either very good intentions. Some people truly believe that their quack experiments are what's going to solve something. And, you know, sometimes scientists go into experiments with good intentions, but that doesn't always work out. On the other hand, you also have people who go into quackery, who develop quack medicine or exploit people for their own benefit, whether in our age that is to accumulate a massive social media following or making money. And you kind of have that as well with certain scientists, they are so brilliant, and who you don't necessarily go into research because they want to cure a disease, but go into it chasing the big nature paper, the big discovery, the big price. And I think there are similarities. And I do think sometimes these people can convince themselves that what they're doing is for the general benefit. Like one of the quacks that I think I talked about at the Greenwich Skeptic Society was uh William Bailey, who developed a radium-based medication to cure input Hems because he felt that radiation, this was in the early 20th century, but he convinced himself that the radiation would cure everything. And that was kind of at the same time as Marie Caree made her major discoveries, and he was a big fan of hers. He caused endless suffering, lots of deaths, but he also took his own medication. So there's an aspect to it where sometimes people are convinced that they're doing the right thing. He did do a lot of other medical scams beforehand, but maybe he just bought into his own hype.

Research Abuses That Broke Trust

James Hogson 4:57

They're convinced they are doing a good thing. And these are very human characteristics, I think, to want to have that positive impact and for that to easily be, I guess, altered in a way that ends up exploiting. And I think we live in a time where there is a lot of skepticism about science. I don't know if this is unusual in history, whether there's more skepticism now than in previous generations. But do you think, given your research into bad science, have there been particular mistakes or abuses that have legitimately fueled some of that skepticism?

Jenny Lange 5:30

Yeah, so I mean, again, certain things are very complicated and have a complicated history. But there is a lot of research that takes advantage of, well, not a lot, but there are certain experiments that take advantage of vulnerable populations and especially those with questionable ethics. So one of the ones that I always think is particularly one of the most shocking ones to me is the Tuskegee syphilis experiment, which took place between 1932 and 1972, where the US Public Health Service studied the natural history of untreated syphilis. So they didn't consent their participants, they were all people of color, limited to black men over the age of 25, which is completely immoral, especially since syphilis was treatable at the time. Their partners get infected. I mean, that is a horrific case of research misconduct. Similarly, like the Medical Research Council in the UK had a study where they decided to test radiation, I think, in the 70s, looking at specific gamma beta emitter to look at iron deficiency in the South Asian population, and they literally provided radioactive chapatis to women. This is an unethical experiment anyway, but without proper consenting. There's a wonderful documentary, I think, done by Channel 4. And I mean, this kind of stuff happens, and that for me kind of very much explains that kind of mistrust in research institutions. There's a lot of good research, but then there's also these studies that kind of make it understandable why people are questioning how people are conducting research, especially black and Asian minority groups, where you then during the COVID epidemic, you saw poorer uptake of vaccines, which then makes sense in that context.

James Hogson 7:42

Yeah, absolutely. The abuses of trust and the discrimination then have that long-tail effect, don't they? As well, it's not just the abuses that they have in the immediate study group, but also the distrust that it shows in society long term.

Jenny Lange 7:55

Exactly. And one of the most fascinating and again, very poor research conduct is uh the case of Henrietta Lax, who was a black woman who had a very aggressive case of cancer. The medical doctors who treated her at the time extracted those cancer cells and generated the first immortal cell line. Now, at the time, they didn't need her consent, but uh they also didn't inform her family, she died, and those cells are still being utilized in research nowadays as healer cells. And her family was unaware of this happening. Again, there's a wonderful book called The Immortal Life of Henrietta Lax. And yeah, that kind of was acceptable at the time, but also so many companies profited of these cells that it is ethically questionable. I think Thermophisher paid out to the family finally a couple of years ago. But it's one of those things where you're like, yeah, that might have not needed consent in the 50s, but also look at what you're doing. Think about the impact.

Repairing Trust Through Openness

James Hogson 9:05

So, as mentioned in the introduction, you are a scientist, you're a practitioner, and so I would assume an advocate for research and the scientific methods. So, how should science overcome these mistakes and uses of the past? Are there other ways to rectify and rebuild trust?

Jenny Lange 9:22

I think first of all, accepting responsibility and having open discussions about it. I think it's very important to acknowledge that science is actually not objective. It is subjective. And I think having conversations about it is very important. If you just pretend nothing bad has ever happened in the name of science, then people are gonna be like, well, no, you're lying. And I think establishing also communicating what used to happen and how we're trying to rectify this today is very important. I think it can be quite boring to discuss, for example, how are participants recruited and how do you consent them. But I think it is quite important to make that accessible. Especially like sometimes with medical trials, things can go wrong. And it's always very grave of people to take part in these trials. So much of the research would not be possible without patient populations. But I think that open discussion is very important. And I do think, especially pharma companies, you had the whole thalidomide scandal, and people did not get proper compensation for this. It was a case of the medication not being tested properly, data being fudged, a patient's NGTs being ignored, yet the company did not do proper payouts. And you've got to be responsible and accept responsibility. I mean, I don't work for a company, I work in academia. But you're kind of responsible for what you're doing. And if you are making mistakes, you need to acknowledge them.

Practicing Proportional Skepticism

James Hogson 11:11

Which is hard for anyone to do, I think. That's sometimes at the base of this. And we mentioned skepticism persists, and we advocate for skepticism in skeptic and humanist groups. So how do you see a healthy measure of skepticism towards scientific studies or scientific results and to proportion your skepticism versus accepting scientific consensus or results? Because for most of us, we're not experts in the field. So it can be very confusing as to know, okay, where should I suspend my skepticism and accept perhaps the results of this, I guess, what scientists are saying.

Jenny Lange 12:02

I find it quite hard to read publications that aren't within my field and trying to figure out what's a good thing, what's a bad thing, right? Where are the flaws of the study? But I think you can have skepticism towards how for a very long time animal models were used where only, for example, male mice were used because people would think, well, female hormones are going to interfere with that. So a lot of research, past research, focuses on like male mice, and that's not necessarily applicable then, because there are sex-specific responses, right? So you can be critical of that and aim to address this. Even myself, sometimes you take new medication, right? I have migraines. I recently tried a new medication, and I was quite scared of the side effects. And I say this as a scientist. I discussed it with my GP and I was a bit like, a bit worried about this, but also I want to try it. So even I sometimes get a bit like, ooh, a bit scared. But the thing is, most of the time these findings have been evaluated. Yes, sometimes it still goes horribly wrong, but the chances that the medication goes wrong is somewhat lower than, for example, you trying to take hydrogen peroxide to cure dementia, because that is actually dangerous. So I think looking in terms of healthy skepticism, find a good basis for what you're reading. Don't just listen to the influencer that's being recommended to you on Instagram. There are science outreach websites that report research news. So I write for Bayerns that have like a weekly newsletter of like scientific findings that are written up by scientists for the general population. If you have a specific disease, so there's websites that specifically write about research news for that community. So look at reputable sources. And I know with media that can be quite hard, but if you're only hearing from it through Facebook and Instagram, that's probably not ideal.

James Hogson 14:16

True. But I think that's where most people we're getting our information now, whether we like it or not, or through podcasts, of course. Do you think there's an imperative on scientists to be active on social media and through new media to get across what sorts the real science from the quackery?

Jenny Lange 14:34

Yes, absolutely. And I think you know, social media is a great way to engage. But then at the same time, if you're a scientist on social media, you also kind of have a responsibility to list your sources and really show what you're basing your content on. And I think that that helps a lot. And that way you also give people the power to investigate themselves.

The Repeating Playbook Of Quackery

James Hogson 14:58

The catchphrase now, do their own research. But informed research, that's what we advocate for. I saw you give with the Greenwich Skeptics, was on charlatans and quackery. So I guess it was the counter to your bad science. This was really the other side of the coin, as we've discussed. And I can really recommend any humanist group. Jenny would be a fantastic speaker. This was a really thrilling talk. And you really detailed the history, or at least the known history, because these types of charlatans have existed in all cultures and throughout time. What are some of the patterns that you see repeated when you look at the historical cases versus, as you mentioned, some of the online gurus and influences that we have now?

Jenny Lange 15:37

When you go back in history, obviously medicine and research is a lot less well established than it is now. During the time of the plague, there were no cures available, right? There was nothing that could be done. Your general practitioner likely couldn't help you either. Any kind of physicians that were at the time working couldn't cure the plague. But then also you had this kind of outburst of charlatans who would say, oh yes, we've distilled this powder from the sun and it'll cure the plague. Now, what that does, it takes people's money for no result. It makes people feel safer, which actually increases the danger because they might think they're now not at risk. And so you have that kind of thing, even that is probably worse than no cure at all. You think you're safe and you're then spending your money on something that is a scam. In the UK, you had that golden age of quackery in the 18th century. And one of the major things that really helped quacks proliferate was advertising and newspapers, and people selling scam medications really took advantage of that. So there were lots of advertisements with testimonials, ideally from like middle class or royalty, kind of saying, Oh yeah, these powders are fantastic. And there's Dr. James's fever powders, I think, which even had a poem dedicated to them, and they were useless. And you know, the 18th century you had some medications that would help. So these people selling these kind of things that were utterly useless, potentially dangerous, because they used ingredients that were used in standard medication as well, but also like, you know, oh yeah, that medication is gonna make you vomit. That's a good idea because you're expelling the sickness and it's actually make people more sick. So you have that kind of advertising, which we very much see now as well. So that's seems to be consistent. You know, you have the newspaper in the 18th century. Now we have social media to spread misinformation on stuff like how coconut oil can cure Alzheimer's disease, um, these vitamins are gonna fix everything. And that's I think another thing. All of these medications, um, quackery medications, most of the time start out with a specific purpose, right? So it's gonna cure fever or it's gonna cure impotence. And then eventually it progresses to it will cure absolutely everything. And I think that's such a major sign of a quack medication, right? If you're like, oh, this one thing is the cure to everything that's wrong with humanity, every possible disease, I think that's a pretty good sign that's not gonna work.

James Hogson 18:39

Yes, so certainly the um extraordinary claims require extraordinary evidence.

Jenny Lange 18:45

I downloaded a horrible book that was in preparation for this talk and I didn't pay for it. And it was literally the called the cure for everything, and it was basically like hydrogen peroxide will cure everything, and you need to find, I think, 37% or 40% hydrogen peroxide. And like there's reviews on Amazon that are like, yeah, the hydrogen peroxide is difficult to digest, and you're just like, Yeah, you're not meant to ingest it, or it unfortunately you can't get hold of this in the UK. Well, yeah, for a reason, it's dangerous. Don't recommend it to your friends and family. You don't owe them that. It's it's a bad idea.

James Hogson 19:26

Oh, that's crazy. And I I think it does speed to this idea that we instinctively we look for simple solutions. It'd be nice to know there is a magical cure out there that could solve everything.

Jenny Lange 19:36

It would be fantastic. And I think especially with neurological diseases or neurodegenerate diseases, it would be lovely if we could cure them. But the brain is very, very complicated. Alzheimer's disease is not a simple disease. Anything affecting the brain is hugely complicated. But these diseases are devastating to the affected individual as well as their loved ones. So people try to find a cure. Like, how can I prevent this? How can I cure this? How can I stop this horrible disease? But unfortunately, it's probably worse if you discard your doctor's advice and then go for the weird scam medication that's not going to work either way. And I think people then go, I've got something alternative, my doctor doesn't like it, and then they stop seeing the doctor. And that's obviously also disastrous.

Times When Quacks Thrive

James Hogson 20:34

And so do we find then that charlatans perform particularly well when there is more anxiety, you know, potentially at the individual level where they may someone may have a disease which is incurable or the prognosis is poor. But also on a broader societal level, we just went through a huge period of social anxiety with the pandemic. And we did see a rise in a lot of supposed miracle cures. Is there a correlation with the prevalence of charlatans and quacks during periods of social anxiety?

Jenny Lange 21:09

Uncertainty, desperation kind of really drives that people seeking solutions when at the time there were none. Before we had the vaccine, it was scary. Um pandemics are terrifying, you know, be it the plague, be it influenza, be it COVID. You want to do something, you want to feel like you can do something to stop it. And you don't necessarily trust. If you have politicians like Michael Gove saying people are sick of experts, that is a terrible thing to say. Because you're actively creating distrust and paranoia. What you should be doing is making what's happening accessible and not saying, well, we can't trust these experts. They're experts for a reason. You can be critical, you can question, you should be looking critically at research results and see what impact they have, what are the side effects, who might be at a bigger risk for something. But you know, the other alternative is not taking anything at all which might be more disastrous. Or, you know, taking something that will additionally damage you.

James Hogson 22:19

I always thought that was curious, the whole I don't listen to experts, what the people are sick of experts. Because it only seems to be in certain fields that people distrust experts. And it does seem to come back to health quite often. I was discussing this with a friend who said they didn't want to listen to experts. And I said, no, when your car breaks down, do you take it to a mechanic or do you go to a someone who is an alternative mechanic online? But when things need fixing, we know to go to an expert. Why do you think health has that level of skepticism?

Characteristics of Successful Scammers

Jenny Lange 22:49

I think it's partially because in research medicine it's actually a good thing if you're like a little bit critical of your own results and have these stipulations. So for example this study was done in this population we don't know how applicable it is. It seems to have some good effect but you know as scientists we are trained to be critical of our own findings and not to overgeneralize. Whereas your mechanics gonna tell you I'm not good with cars. Like that part is broken, I can 100% fix it, right? Whereas you go to a medical practitioner, you go to a good scientist and you're just like well there's a possibility that this is what's wrong and that is a good thing. But I think that then creates that pocket for people to be like oh well you're not sure about this so I don't trust you either. Whereas you find that the bad scientists who have like made great strides with their terrible findings it's like Andrew Wakefield with a completely bogus autism study or Paolo Macchiarini with his trachea implants that killed a lot of people and were never trialed on rats. These people were incredibly confident in their findings and that then convinces people. Whereas I think a good thing for a scientist to be is like these are the limitations of my study. I need to think of the limitations of my research. And I think that opens us up a little bit to people going well if you're not sure I'm not sure I won't listen to you.

James Hogson 24:18

I was going to ask why charlatans tend to be successful obviously some are more successful than others and do these features of certainty and charisma are they quite key to convincing people certainty charisma people being very convincing knowing your target audience is also really important.

Jenny Lange 24:41

So I mentioned the guy with the radium-based medication now he knew how to talk to other scientists which is what really advanced him and look at influencers they know their target audience they know what to exploit so yes charisma will help and then a simple response good content production and if you're very confident and you're telling people I know how to solve this or this is causing this then it's a lot easier to listen to that person.

James Hogson 25:17

So for the non-experts and the layman out there like myself what is the clearest signs and advice that you can give to distinguish between good proper science and bad science or pseudoscience?

Jenny Lange 25:29

It can be quite hard especially since most people you know can't go back to the medical texts. Look at the sources where has it been published who has been talking about it where does it come from what is the study like how has the research been conducted it's very important that it's peer review and clinical trials those are actually becoming more accessible people release clinical trial results and you can find them. So it really depends what you're looking at the whole eating coconut oil can cure and prevent Alzheimer's now there's a couple of books on that on Amazon or wherever and you look at who's endorsed this and it's the guy who wrote men are from Mars, women are from Venus I think that's an immediate sign for me to go oh no. And I think really looking at the sources is very important.

Dementia Research And Hope

James Hogson 26:28

Thank you so much for everything that you're doing to raise awareness on these topics. As I said it was a fascinating talk and it's been a pleasure to speak with you again today. I'd love to find out a little bit more about your areas of research before we go because obviously whilst you talk in these areas and I know you're you're an active scientist as well. So what is your current area of study?

Jenny Lange 26:48

So I work on a number of different diseases all affecting the brain. I am specifically interested in the cells in the brain that aren't your nerve cells or neurons. So your brain is full of very interesting cells. Everyone knows about nerve cells because those are the ones that degenerate in Alzheimer's and other diseases but there's also a subpopulation of cells called glial cells and they form part of the brain's innate immune response. So you have microglia which like eat all of the stuff in the extracellular environment you have astrocytes that have many many different functions they're called so because of their star shape and those are the kind of cells that I'm focused on. I work with human models of disease so there's a wonderful technique that was developed to take someone's skin cells and reprogram them in a dish in the lab into stem cells. And then we have these stem cells that might be from a healthy individual or from someone who has a specific genetic disease and then we can generate them into any cell type that we like as long as we have the appropriate protocol. So that's kind of how I model disease in a dish, studying those specific cells. My main project I'm currently working on Alzheimer's disease and looking specific at the waste disposal system within the cell because it's very important that the cells are able to degrade stuff especially in neurodegenerative diseases where you know things accumulate. My real passion is childhood dementias which are individually very rare but I did my PhD on a form of childhood dementia called Batten disease. And I'm looking specifically at the role of astrocytes there. So that is kind of my work that I'm taking further. I have a wonderful student working on this at the moment and it's very exciting because of course dementia and neurodegeneration is devastating but also you know when you have children who develop this disease with symptoms starting at the age of one and then dying by the age of 10 it's horrifying and you know as a group of diseases childhood dementias less than 5% have disease modifying treatments. So they're under-researched they're underrepresented pharma companies sometimes like to stay away from the micostal rare but they have such a massive impact. And then my HINO project that I work with at the Institute of Child Health focuses on Duchenne muscular dystrophy which by the name is obviously largely affecting muscle but the gene that's affected is actually also expressed in the brain. So with Duchenne muscular dystrophy there are some gene therapies now available that stop the muscle degeneration and stop the disease from being fatal in some patients but more than 50% of affected boys have cognitive symptoms as well that affect quality of life because the gene and then the protein itself does something in the brain and that's kind of what we're working on to figure out how it affects the brain.

James Hogson 30:05

Very fascinating it's a whole new interview field in itself and what do you see as the outlook for the prevention potentially the cure when we talk about Alzheimer's dementia as you mentioned these are very difficult challenging diseases to address so Alzheimer's is very heterogeneous.

Jenny Lange 30:24

It doesn't have a clear genetic cause so there are forms five to ten percent that are familiar that have a very clear genetic cause but then you have risk factors so it's it becomes very complicated. You have some diseases that have a very specific cause where one gene is affected. So for example you have Huntington's disease where we know the Huntington gene is affected we know you know what goes wrong with it. And there has been a very successful clinical trial recently so there is a lot of hope. But for Alzheimer's Parkinson's it's not I mean Huntington's isn't straightforward either but it's it then becomes also more complicated and we're trying to figure out which pathways are affected first and which cells how can we target them? Because at the moment you know we're targeting plaques which are very much end stage of the disease but you need to get in earlier to prevent that neuron nerve cell death.

Changing Minds

James Hogson 31:25

Jenny Lange thank you so much for everything you're doing and taking the time to speak with us today. Before we go we have our standard closing question which is what's something which you've changed your mind on recently and what inspired that change?

Jenny Lange 31:38

I changed my mind all the time. I think it's a good sign for it's great to have a hypothesis and follow that but sometimes you have to change your mind about certain things in light of new data. I spend a lot of time on the microscope to image cells to see what they're doing. I think that's one of the things that I recently changed my mind about. I had long discussions with the head of my lab about how we best image these things and and analyze them and I was very sudden for a long time and then I was like actually no that's it's a stupid idea to be certain about something and not explore it. So I frequently changed my mind about things based on new data in this case the microscope and how to analyze it.

James Hogson 32:25

Like a true scientist. Dr.

Humanise Live 32:27

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