Transcript: Podcast Episode 192: Exploring Scientific Miscommunication
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Intro Music
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Isabella [00:00:09]: Welcome to episode 192 of our podcast about science communication. My name's Isabella. I'm in first year Forensic Science and my research paper is titled "Antidepressant Perception: What Can Be Done to Fill This Education Gap?"
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Seohyeon [00:00:24]: My name is Seohyeon, and I'm a first year in Commerce. I'm going to be talking about the neural basis of herd behavior and how can we communicate this to the general public in an effective way.
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Sama [00:00:38]: Hi. My name is Sama, and I'm a first-year Life Sciences student. My research paper pertains to looking at Theranos as a case study and looking at the role of the scientific community in evaluating the claims of corporate science.
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This podcast is divided into three main sections. In the first part, which is this one, we're giving a general overview of ourselves and our projects. Our second part will entail each of us going in-depth about our own research project, as well as posing some related questions. In our third and final part, we conclude by having a general discussion and tying in all the relevant or similar themes between all three research papers.
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Seohyeon [00:01:17]: So that concludes our part one of introduction. Let's get on to part two.
Music
Sama [00:01:31]: Okay, so we'll be starting off with Isabella. Could you provide us with some background information on antidepressants, specifically SSRI? Why did you choose this research topic?
Isabella [00:01:45]: Yeah. So, antidepressants were first introduced in the 60s as a form of mental health treatment and have since become one of the more common ways to treat certain diagnoses, such as anxiety and depression. SSRIs came a little later, approximately like the 1980s. However, there is still no conclusive and consistent research presented on these types of medication.
Seohyeon [00:02:09]: Do you know who invented the SSRI?
Isabella [00:02:13]: Nope. That's a great question. I really don't know!
Seohyeon [00:02:17]: Okay, continuing.
Isabella [00:02:19]: So, as a result of this lack of conclusive data, there has been a lot of hesitancy on using these types of medications in recent years. The catalyst for it was this famous umbrella review written by this researcher named Joanna Moncrieff. That research paper aimed to debunk the serotonin hypothesis of depression, which stated that depression and anxiety don't stem from a chemical imbalance in the brain, contrary to what we were led to believe since the very beginning. As a result of this article being published, many other publications were later released criticizing the article for eliciting more stigma and confusion around the topic. These other researchers - instead of dismissing the serotonin hypothesis - established that hormones may not be the sole contributor to depression but can still be involved. And as a result, there was a gray area regarding the effectiveness of SSRIs. So conflicting conclusions and their inability to enlighten the public regarding antidepressants indicate a lack of proper education regarding the dependency, long term effects, and overall effectiveness of the medication, and is responsible for the gap between the
science and the uptake. So as a result, I propose the question: How has the limited scientific education surrounding the use of SSRI impacted societal trust in antidepressants?
Sama [00:03:44]: Interesting.
Seohyeon [00:03:45]: Do you guys have experience with SSRIs?
Isabella [00:03:50]: Yes. That was actually one of the main reasons why I started this research.
Seohyeon: [00:03:57]: Okay.
Isabella [00:03:59]: Yeah, because when you do use them, they give you this big booklet of information about it.
Seohyeon [00:04:04]: Have you read them all?
Isabella [00:04:05]: I have read all of the side effects and it's...I don't know. My first thought was why are there so many and why would we be given this then? I guess that's why this kind of started.
Seohyeon [00:04:17]: Yeah.
Sama [00:04:18]: What findings did you have in your research and how did they impact the answer to your research question?
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Isabella [00:04:25]: So, my main focus was on the sources that Johanna had used in her umbrella review and overall, they weren't really reliable enough to gauge hormonal links and if they exist between that and anxiety or depression disorders.
There was an author mentioned, his name was David Healy, and he had stated that SSRIs were a marketing scheme because they were like a safer version of tranquilizers. This article wasn't really written through a biological perspective, which the umbrella review seemed to be written as, but also the author is a part of an organization that works with particular drugs and like their side effects. That could have contributed to a bias, because when looking at the side effects, you have to essentially consider whether or not it's effective or it's reasonable to be marketed to such a large population. So, I feel like that might have been a bit of a bias for his work that he published.
Sama [00:05:38]: Interesting. That's unexpected.
Isabella [00:05:40]: Even along with that, though, I had tried to see if there were any articles proposing a solution to such a drastic gap. There were very few of them, which I found interesting because this is a very common topic that's discussed, whether it's biologically or like mental health day, stuff like that. I did find one article though, by Annie John, and she wanted to analyze the impact of an educational session in depressant naive patients that were prescribed antidepressants. What was found was that most patients didn't know the name of their medication, the dosage they took, or even the symptoms. This sort of naivety was concluded to come from the fear and hesitancy that stems from the online exposure of what SSRI could contribute to in the future.
Seohyeon [00:06:32]: So, they didn't read the booklet?
[laughter]
Isabella [00:06:35]: No, they didn't. When people learned about their medication, they became more aware. But they were still fearful of their diagnoses, which kind of tells you that whether you know about it or not, you don't know enough to be able to say with confidence that what you are taking is safe for you, which is kind of scary because you would think that there'd be so much conclusive data.
Sama [00:06:59]: Yeah, especially for such a widely used medication…So what conclusions did you draw from those findings?
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Isabella [00:07:12]: Essentially, as I mentioned, what I've discovered was that there is no clear research that provides significant enough evidence to say anything bad or good about antidepressants. Most of the research, in fact, prompts further research, like stating "We need to do more research because of inconclusive data". Which, for example, back to David Healy, this article that was used, it bashed pharmaceutical companies for prescribing people unnecessary medications. However, they go to say that it still has not been discovered whether depression has anything to do with hormone levels in your brain. So, you don't really know if something like that is unnecessary, so it just really confuses you.
Seohyeon [00:07:58]: So, do you believe that the way the antidepressant pharmaceutical companies, discuss or brand their products contributes to lowered societal trust regarding SSRI?
Isabella [00:08:09]: Honestly, I feel like in some way, yeah, because essentially there's like a promise of so many things that could go wrong and so many things that can go right so you don't really know whether or not you'd be better off taking a medication or you'd be better off going to therapy or something. I think that the fact that you can go on with pages and pages of side effects for one benefit of a drug, and I think because pharmaceutical companies do that but still also encourage you to purchase their drug definitely contributes to a lack of trust.
Seohyeon [00:08:47]: Huge list of things that can benefit you or things that can harm you. I never read that, it's too long...
Isabella [00:08:54] :Yeah, I know! They always are. You see it on bottles or like when they go through it really fast when it is advertised.
Sama [00:09:00]: It's the first thing I check, because I'm like "Oh my God, all these side effects!" Sometimes it's interesting because you're like, “How does this system target that other system and how do you get these diverse side effects?”
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So back to your findings…
Isabella [00:09:13]: Yeah. Unfortunately, because lack of information has gone on for so long, even though there is stigma that's being combated about mental illness just being validated in general, there is a bad reputation on this type of mental health treatment. However, with the existence of articles, such as the one written by Annie John, researchers have begun to understand the lack of education that surrounds the fearful perception of antidepressants. This appears to be - although relatively new - a goal that, regardless, has begun to emerge for many studies across the world.
Seohyeon [00:09:54]: Yeah, I saw from an article that most science programs don't require students to take science education courses or science communication courses. I mean it's not required courses in their pathways to getting their science degrees.
Sama [00:10:09]: But it should be, shouldn't it?
Isabella [00:10:10]: Yeah, it's really important. I feel like if I didn't take this course, I don't know about you guys, but there's a lot that has to go into research, not even the research part, just let alone if it should be given to people or released in general.
Sama [00:10:27]: Did you find any solutions? From what I understood, you think that the lack of communication is the main catalyst for the hesitancy and the stigma around anti-depressants.
Isabella [00:10:39]: Yeah. While there seems to be a clear issue, there isn't yet a concrete solution to the problem.
Seohyeon [00:10:47]: You sound like scientists...You're like, "Oh, there is no solution."
[laughter]
Isabella [00:10:51]: Further research must be conducted. But with the emergence of new genres of text mentioning significance of antidepressant education, it is very much possible. The article I mentioned prior does a great job in summarizing the issues with current studies done on education, one of them being that sample sizes are too small and niche to detect any significant trends in antidepressant use. So even though they were providing education, this education was very minimal and very broken, essentially. They just started forming it. So, one of the main next steps I believe should be taken would be to have a strong foundation of the participants that they are using in these kinds of studies, because oftentimes articles tend to focus on the perception of the article by people in like the professional or medical field, to be used in other studies. However, these studies should be focused on the population that the published articles may be inclined to skip past, such as the general public, even if they might not have a niche understanding of science. And as opposed to education and communication to only be provided in research papers, I think it would be especially beneficial to have baseline educational modules provided to the public outside of participating in studies, so whether that's educational pamphlets provided during therapy, psychiatrist consultations, or even in the workplace or school employees because there are a lot of mental health benefits that arise in school and work environments. Although education usually has like "Okay, this is what you should believe...”, they should be concrete in what they know while emphasizing that a lot of things are unclear.
Seohyeon [00:12:34]: Okay. That's true. Yeah.
Sama [00:12:38]: Yeah, because they always say, " Science says that." I think it's very important to say, "Well, science says that but they're not sure."
Isabella [00:12:49]: My conclusion is that because there is no direct conclusion, more research and more education needs to be done just in general for all aspects of who is involved in these kinds of research. It's very important.
Sama [00:13:04:] Yeah, we were taught in this course that a lack of finding is a finding itself. This points us towards the direction that we should be going. Speaking of directions, we'll be changing to Seohyeon. Are you ready?
Seohyeon [00:13:19]: My topic was about the neural underpinnings of herd behavior. To put it simply, heard behavior, also known as social conformity, is like humans imitating other people not based on their own beliefs or opinions, but just because other people are doing it. So, an example that I would give is let's say you go into a room and then there's a stack of red hats and everyone's wearing red hats. You just ask the supervisor, "Do we need to wear red hats?" Then if the supervisor says no, would you guys still wear it when everyone's wearing it or would you not?
Isabella [00:14:03]: I'd be very inclined.
Seohyeon [00:14:05]: Right? Yeah, that's herd behavior. So, although the supervisor said that you don't need to wear a hat, you would probably do it because everyone's doing it. I was wondering what happens to your brain when you conform to societal norms. So, there was an incident, a very recent incident. Do you guys know Quencher tumbler?
Isabella [00:14:28]: Is it like the glass?
Seohyeon [00:14:30]: Yeah.
Sama [00:14:34]: Oh, the Stanley Cup? There was a whole craze over it.
Seohyeon [00:14:39]: Yeah, yeah. I think it mainly happened in the US though, not in Canada. The store stopped selling it, but then there was one influencer, I don't know her name, but she started advertising it, and then people started buying the tumbler and then, there was like a line of people waiting for the tumbler overnight. Just to buy the tumbler! I mean, a tumbler is a useful item, I guess. I’ve never used a tumbler, but I guess it is. But I wouldn't personally wait in line to buy one. But people did. That kind of shows how people are easily affected by other people. They might be buying it because they want to buy a tumbler, but then, most people I think are buying it because other people are buying it.
Sama [00:15:41]: So, based on your research, what kind of discoveries did you make regarding a solution to unconscious decision making and how to be aware of when we're engaging in herd behavior?
Seohyeon [00:15:51]: So, when I was doing the research, I found lots of articles explaining the neural basis of using fMRIs technologies to look at the brains, but they never talked about how they could communicate the findings to the general public in a way that people like us can understand easily. I found that scientists have been communicating using a model called the deficit model. The deficit model is basically scientists trying to fill the knowledge gap of ordinary people. So, they think “Oh, you don't have the scientific knowledge”, so I just fill that gap by just giving you the information.
Sama [00:16:39]: Isn't that a good thing?
Seohyeon [00:16:41]: It's not. So, let's say you don't know about an economics concept and then I just explained the concept to you using fancy jargon that you don't even understand. Then, you might understand it in the first place, but you're going to forget anyways, right? So, it's like scientists thinking “Oh, these people are kind of stupid, so let's just throw the information and then let's hope they understand.”
Sama [00:17:16]: Ok, no, that's bad.
Seohyeon [00:17:19]: So, I found another way of communicating science to the public, which is using storytelling to communicate. The framework that I talked about in my research paper was a framework called the “And, But, Therefore”
framework, ABT shortened. It's basically composed of three parts: And, But, Therefore, as you can see in the title. “And” is more like an intro, an area where you kind of introduce what's known, what people think, their usual kind of perception, etc. “But” is where the tension is introduced, so like the things that you don't know are going to be introduced, creating a kind of an interesting “vibe”. “Therefore” is the solution part where you conclude everything. If you compare that to a story, “And” would be like the introduction… Do you guys remember the hill you take in humanities class? “And” is like the introduction, then you go up to the conflict...
Sama [00:18:24]: Which is the “But”?
Seohyeon [00:18:32]: Yes, and then “Therefore” is like a resolution where the good characters win, etc... So, for the “And” part, in order to communicate the neural basis of herd behavior. I thought that telling the public about how people view herd behavior might be useful. I found that many people value herd behavior based on benevolent intention as good, while herd behavior based on like self-interest is bad.
So, when people conform in order to benefit the group, people think that's good, but then when people conform just to fit into that group, that's self-interest, right? That's bad, so people think that's bad.
Sama [00:19:24]: Oh. So would confirming, for instance, with the Stanley Cups be considered…
Seohyeon [00:19:29]: That's bad, because you're buying it just because people are buying it, like “I'm going to buy it to fit in.” But the more interesting finding was that when people themselves conform, they think that their action and their conformity is based on benevolent intentions. So, when they conform, they think they're conforming to benefit the group. When other people conform, they think they're conforming just to fit in.
Sama [00:20:00]: I mean, they're benefiting the company…
Seohyeon [00:20:05]: So that's the general perception of herd behavior, which could be added to the “And” part of the framework. Moving on to the “But” part. The “But” part is where the actual tensions is added. So, the scientists could include their findings about the brain that show that individuals actually conform because of self- interest not because of benevolent intentions. There was this one study done by Burns. These adolescent participants were asked to rate given song clips and then after they rated all the songs, they heard about what other people rated that song, and then they rated the same song again. It was found that they actually changed their perception or their ratings after they heard what other people rated. The researchers looked at the brain when they changed their ratings, and they found that there was a decrease in their ventral striatal activity along with the insula ACC activity increasing. That shows that there was an incongruency between one's rating and other people's rating and that triggered an emotional dissonance. So that's how they change their readings because they're like,“ Oh. This is not feeling safe. I should change the rating.” That's how their brains worked. As I mentioned, this is called mismatch anxiety. So, people tend to mimic others in order to avoid the disutility that you would get from going against the normative opinions. The researchers concluded that people are motivated to pursue the positive utility that they would get from conforming to others rather than going against and then getting the emotional dissonance. So, this is a form of a self-interest, where people conform just because they want to get positive emotions. This is different from what other people thought as herd behavior because as I said, people thought their conformity is based on their benevolent intention to benefit the other group, but it is actually because of their self- interest to avoid their emotional dissonance. So that would be a tension in the “But” part. And then the “Therefore” part is just like a short conclusion or solution to the problem.
Sama [00:22:51]: So, what’s your “Therefore”?
Seohyeon [00:22:56]: My “Therefore” was that a scientist should explicitly state all the thing that I talked about in “And” and “But”, so like individuals conforming to norms is not the result of benevolent intention, rather because of their self-interest to avoid the emotional incongruence generated by their brain. The scientists have to explicitly state that to the public in a way that the public can understand.
Sama [00:23:25]: So, using ABT, right…
Seohyeon [00:23:27]: Scientists should lead to another conclusion: that people should pause and reflect when considering the purchase of trending goods or popular goods by questioning whether their decision to buy is influenced by a desire to mitigate emotional discomfort or because of a genuine need or preference.
Sama [00:23:49]: Okay. So, any concluding remarks?
Seohyeon [00:23:52]: That led to brief next steps of bridging the gaps between the scientists and journalists because scientists communicate to journalists and the journalists communicate the public. That's one form of communication, so if we could bridge the gap between all of these, it would be great.
Isabella [00:24:13]: I just, I don't know, I think of those cliché celebrity sites and stuff like that. That's what I think of with journalism. So, I know ABT would be established as a way to get to the public, right? Would that also be a way to get to the journalists? I would assume that journalists don't have as extensive of knowledge as scientists might. Would it work the same way?
Seohyeon [00:24:44]: Yes. Since journalists are the ones that are writing the journal, they should have at least a little bit more science knowledge than the public, so they might be more knowledgeable than to need the storytelling model (to understand), but it should still be communicated in a similar format to journalists.
Isabella [00:25:04]: Speaking of scientists, Sama, your research is about like scientist groups and corporations, right? So, do you want to provide us with some background information on your research and why you chose it?
Sama [00:25:19]: I specifically looked at Theranos to look at the role of the scientific community in evaluating corporate science. By corporate science, I mean biomedical or biotech companies. So, for background, Theranos was a biotech company that was founded by Elizabeth Holmes. Elizabeth Holmes was hailed like this upcoming genius. She claimed that her revolutionary innovation was capable of conducting hundreds of tests. She claimed 240 tests could be conducted on a single drop of blood. That's quite a bold statement, and a lot of people fell for it, like high-profile individuals, investors, customers and the general public. But in reality, Theranos was actually committing fraud. They were regularly violating regulations. They were deceiving investors and customers, and they were actually exposed by a Wall Street journalist by the name of John Carreyrou. He later on he went to publish a book called Bad Blood, where he interviews whistleblowers and goes in-depth on the rise and fall of Theranos. This was very interesting, but what really struck me was that when I was reading about the case of Theranos, I kept asking: Theranos was a scientific company, right? So where was the scientific company when this fraud was uncovered? Why was it uncovered by a journalist and not by the scientific community? I believe that they must have had a role in evaluating and discovering Theranos' 'science'. But I quickly learned that that was not the case because there was minimal to nearly no communication between scientific communities and the scientific companies. And so, therefore, I shifted my research question to addressing this problem. I asked, how can the communication between the scientific communities and the medical or biotech companies be improved? This is very important because I want to ensure that you can prevent future discrepancies as well as recognize honest mistakes or defects in the scientific basis and the technologies and these general approaches that companies rely on.
Seohyeon [00:27:24]: Did that company have scientists, and did they know about the fraud?
Sama [00:27:28]: Yes, they did. That's a very interesting question. What's very interesting about Theranos is that it's a very unusual case where everyone was kept in the dark. Elizabeth Holmes and her partner who goes by the name of Sunny Balwani were actually the only ones who were aware of all the moving pieces that were going around. So, the investors had no idea. As for the scientists, let's say you're in a specific department and I'm in a specific department. I'm working on, say, PCR, and you're working on gene editing. I have no idea what you're doing, and you have no idea what I'm doing, and if I asked Elizabeth Holmes, she'd make up a lie. She'd be like “You're doing really well and based on what you're doing, our technology, which is kind of going through a rough patch, will pick up and it will do well, and we'll revolutionize it”. In reality, both of us are really not doing well. If I doubted it or if I had any questions, Elizabeth Holmes would be generous enough, where she could fire me. She did a lot of threatening and intimidating for whistleblowers and people who started to doubt that maybe things weren't going well.
Seohyeon [00:28:43]: I think that's like all those movies or dramas where there's no communication, like characters don't communicate at all.
Sama [00:28:49]: And like it happens, but you wouldn't think it would happen with a scientist company.
Isabella [00:28:55]: What did all this research lead you to discover? Because clearly there must have been a lot leading up to it.
Sama [00:29:00]: There is a lot. So, remember how I was talking about how I was wondering where the scientific community was when all of this scandal was going on? Well, there were actually a few members of the scientific community, like Dr. Ioannidis and Dr. Diamandis who had long voiced their concerns over Theranos' research and scientific practices. They coined the term ‘stealth research’, which Theranos was regularly engaging in. Since Elizabeth Holmes claimed that this was revolutionary technology, she literally kept everyone in the dark about this technology, which we know is non-existent now. By citing that rival companies would come and use this technology, she kept her findings strictly confidential and ambiguous. Obviously, there should be a degree of confidentiality when it comes to these companies, but not to the extent that scientists and experts couldn't even evaluate the science and see whether it's legitimate or not. Dr. Ioannidis and Dr. Diamandis also believed that Theranos' claims were just simply not scientifically or even biologically possible because you're running 240 tests, right? You're running them on these test materials or the substrates. They claimed that at the level of technology that we have and the biological knowledge we have, there's simply not enough material or like substrates or the thing that you're testing for in a single drop of blood for you to even be testing.
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Isabella [00:30:30]: Yeah, that seems like a lot.
Sama [00:30:32]: These are a lot of very important points, and they were made by researchers and doctors. If these evaluations were significant, why didn't more scientists voice their concern? For those who did, why weren't they really heard? The research led me to discover that miscommunication and lack of communication is quite prevalent, and it's prevalent both within the scientific community, so between scientists themselves, and between scientific communities and the companies. For instance, the American Association of Clinical Chemistry had some scientists who were board members on Theranos. These scientists- I couldn't find much information but- they either didn't disclose their conflict of interest or they outright thought “This was like a minor thing, and we can overlook it”. So, what happened was that the conference itself, as well as the scientists themselves were very resistant. There was some hostility to the critics of Theranos, like Dr. Ioannidis and Dr. Diamandis.
There's this outright kind of hostility or resistance to these ideas. On top of that, scientific journals and publications didn't help either. They either downplayed the importance of the scientists, where they thought “You know what? This is interesting, but it's not related to the scientific community”, because when you think of scientific articles, you generally thinking of research findings, or something of that sort. They thought this was outside of the scope of the scientific community. And those who did, they kind of put it at the bottom of the publication priority list. So, it wasn't something important.
Seohyeon [00:32:11]: Why didn't the general public pay attention to scientists talking about and criticizing Theranos?
Sama [00:32:19]: That's a very interesting question. So, I think there's so many different reasons. First of all, Theranos is a biomedical company.
Seohyeon [00:32:26]: A big company.
Sama [00:32:27]: It's a big company, but I don't think an everyday person would be exposed to it. It's a very big company but it's also niche, where you only know it if you need blood tests. So, it's not one of those known companies that you would genuinely be researching or actively looking up. I think it's also deemed legitimate by the public, in a sense. So, when you're going to do your blood test...like I had a blood test a couple of weeks ago and I didn't even think of who was going to be testing it or what company is testing it.
Seohyeon [00:33:06]: Yeah, like who would even think of that?
Sama [00:33:09]: Exactly! Also, I can think of two more reasons. First and foremost, Theranos really deceived a lot of people. Elizabeth Holmes had deceived Joesph Biden, the current American president. and Henry Kissinger as well. They were all out in the public and gave them tours of her lab. I'll talk later on about how catastrophic that was. They (Biden and Kissinger) were all like, ' This is revolutionary'. And so, the public, would have been appealed more to, or would think more of, what Joseph Biden said or Henry Kissinger or these high-profile individuals say rather than go to scientific publications and journals, which are the main medium that scientists communicate in and that aren't necessarily regularly accessed by the general public.
Seohyeon [00:33:56]: Right, okay. Did the community's outlook on the need for its involvement in evaluating corporate science change after the Theranos ordeal?
Sama [00:34:06]: Yes, it did, and significantly. Prior to Theranos, you had researchers proposing different models for scientific and corporate communication, like the Open Innovation model or the PPA: Public Private Academy Partnership. But these were considered models that were beneficial complements, meaning that it's useful for innovation and for science if you do it, but it's not necessary. The Theranos scandal shifted the general perspective and underscored the need for the scientific community's involvement in regulating corporate science. So now researchers generally don't think "It would be useful if they did it". It's more like "It's a necessity right now". Stealth research, which is not only used by Theranos, but has been used by some other companies has been recognized as an economic, scientific and societal danger. Theranos took $9 billion of investments. Imagine what could have happened if those $9 billion went to legitimate scientific companies...
Researchers actually ended up presenting numerous recommendations after the lessons they learned from Theranos. Some recommendations would be like requiring companies to undergo peer review by scientists in the academic community in order to obtain approval for extending patent protection or publishing their preprints, for instance, in open access sources.
Seohyeon [00:35:33]: What if the scientists peer reviewing the articles are also paid by the companies?
Sama [00:35:39]: Yeah, that's an interesting question. There should not be any conflict of interest. Generally, in a peer reviewed process, there shouldn't be a conflict of interests. But later on, for my potential solutions, I actually proposed coming up with this academic-scientific department where all the individuals have absolutely no ties to anything whatsoever. Just to be safe, just in case.
Seohyeon [00:36:05]: That's me. I don't have any network connections.
[laughter]
Sama [00:36:07]: If you want. Seohyeon to peer review, reach out to her!
Seohyeon [00:36:16] Yeah!
Sama [00:36:17]: So Theranos also exploited some loopholes in classification systems, FDA laws and things of that sort. That has prompted different scientists like Lackner and Mario Plebani to call for regulatory bodies to address and resolve these loopholes.
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Isabella [00:36:28]: It's always the companies that do the most fraud that really discover the loopholes in laws and regulations. I don't know, it seems I guess you got to be smart about it, right? If they were able to keep their own scientists in the dark... So, seeing as this communication flaws have been discovered and recommendations were made, does that mean that you have found a concrete solution, or scientists have found a concrete solution to this problem?
Sama [00:36:56]: We're on our way, but not quite. So, as mentioned above, there are so many different individual recommendations. These recommendations are significant and they're ample, but there hasn't actually been an attempt to take them all in and put them together in a concrete framework that just encompasses the central aspects of the problem and provides a concrete solution for how the academic and corporate communication should be guided. What I found was that members of the scientific community actually surprisingly, usually don't possess any authority or official position to regulate or evaluate corporate science. So, with Dr. Ioannidis and Dr. Diamandis, they chose to evaluate Theranos on their own accord. They went out of their way, and they crossed that boundary, and they were like, "We'll be evaluating Theranos". And so, how can scientists be expected to monitor and assess these claims of corporate science when they don't have the formal capacity to do so? And so, I propose a framework where the scientists are given an official, authoritative kind of role in doing this.
Seohyeon [00:38:05]: Like by the government?
Sama [00:38:06]: Yeah. Probably. I think you would need the government having this written in the law for companies to stop looking for ways out of this because it's not cheap.
I propose a framework which I called the Scientific-Academic Corporate Collaboration Framework. It kind of brings in all the different recommendations I discussed and some new ones as well as some ideas of my own. The general gist of it is that scientists should be with the companies in an official capacity every step of the way. Yeah, you're like "Oh, this is a lot of work"… So that's like the Development Stage, the Pre-Marketing, Marketing and Post-Marketing stages. They have to be there in all stages. Development is when the companies are developing their products or their techniques or so on. Some suggestions would be applying the PPA model I discussed. You could also have websites like Secure Online Assistant Platforms or Open Publishing. Open publishing would allow for data sharing between different companies as well as scientists. It's patent protected and the data is not very confidential so that everyone benefits. Because science is always evolving, and companies have a lot on their plate, they might not necessarily be up to date with these evolutions the way that an academic scientist is. So, it's very useful if you had them, either in like an open way or through Secure Online Assistant, which is an anonymous platform.
Seohyeon [00:39:39]: Can the public also access it?
Sama [00:39:42]: Open publishing and data sharing should be accessible to the public. It's a general kind of discussion on the techniques that are currently being used or things of that sort. But the secure online assistant platform is strictly confidential between the company and the scientists, because here, these companies are going to be asking specific questions relating to their methods or their products, so you want to ensure that there is no, once again, rival companies or patent protection issues.
Seohyeon [00:40:17]: So, the need to give the patents or the copyright to the scientists is also important so that the other rival companies don't copy it.
Sama [00:40:29]: Yes. Exactly! I also suggest audit trails. That's a final step that I propose in the development stage. So Theranos actually deleted their databases.
Every company's supposed to have a database where they keep all their improvements and all the trials that they run, and all their scientific information. Theranos actually manipulated it first of all for years, and then they deleted it and claimed they forgot the password so they couldn't access their backup one.
Isabella [00:41:04]: They forgot the password ?!? Wow.
Sama [00:41:08]: Yeah!! I'm like, clearly, we need to do something about that! As for the Pre-Marketing stage, like I previously mentioned there's this Assessment of Corporate Science Department (ACSD), which is the independent body of scientists and researchers that work preferably in universities, and they'll be working in an official capacity to validate company innovation, and that includes doing peer reviews.
Seohyeon [00:41:31]: Okay.
Sama [00:41:32]: A suggestion of two peer reviews, because research says that that's the most cost-effective. Also, the reliability of that 'science' at that given point in time, -obviously science changes, but at that instance,- if you had two peer reviews or five peer reviews, reliability doesn't change significantly. So, two peer reviews is that threshold, for scientific companies, offered at a lowered or non-taxable cost because companies are paying out of their pocket for this.
Seohyeon [00:41:59]: Is this committee comprised of students, graduate students, and master's or professors?
Sama [00:42:06]: Preferably, professors, I think. Again, depending... maybe graduate students as well. They'd be people who have to be experienced enough to know the details of science and whether it (the science being evaluated) is true or not.
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Seohyeon [00:42:19]: More income for professors!
[laughter]
Sama [00:42:21]:That independent body would then release their non-classified academic reviews, like a summary stripped of all the classified information, to the public, of the validity, the reliability and whether they approve of that science or not.
Seohyeon [00:42:39]: That's awesome. Yeah.
Sama [00:42:41]: Learning from Elizabeth Holmes, who overstated and undersold. Well, undersold is an understatement, I think the key idea in the Marketing stage is the Good Manufacturing Practices (GMP), which is to ensure that companies are very transparent about their claims and what they say they can do. If they're not, then there could be a series of consequences that can range from something mild, like them having to publicly retract their statement all the way to an official investigation. After the product or the technique is used, you need to have regular annual random inspections, continued peer review monitoring and regular audit trails. This is where I tell you about the lab story, which is what I conclude with. It's a funny but sad little story. So, Joe Biden actually went on a tour of Theranos' lab. It was a scheduled tour, and he came out and was like, "This was a wonderful experience, the lab is all state- of-art, and this is revolutionary!". But the problem was, you'd discover years down the line by some whistleblowers, is that that wasn't a lab. That was a set, like a movie set!
Isabella [00:43:51]: Oh my God!
Sama [00:43:52]: It was a set because she knew in advance when he was coming! So, her 'lab' was a whole set with non-functioning equipment. Everything was not functioning. And if you were a scientist, you would immediately have noticed and you would have called that out. But for investors or other people, with something that's "state of art" and from it's Elizabeth Holmes you wouldn't even think of it.
Seohyeon [00:44:16]: Were they broadcasting it to the media or the news?
Sama [00:44:19]: It was in the news but I'm not sure if the entire tour was broadcasted. There were pictures of it and then, after it was brought to attention, you have the vigilant netizens who would be like "Look at the little, left corner, this is fake!" So that's why you need to have annual and random inspections by scientists.
Isabella [00:44:43]: That’s crazy, honestly.
Sama [00:44:44]: So that's how I conclude. This is the framework that I think is going to definitely be difficult to apply but very useful.
Isabella [00:44:53]: Honestly, it's a pretty solid framework. I mean, of course anything like that is very tedious, but it can be done.
Sama [00:45:00]: Thank you, hopefully some day in the future!
[laughter]
Isabella [00:45:17]: So, I think now that we've set up a foundation for all of our research, I think it's time to discuss the overall miscommunication of it to conclude our podcast episode.
Sama [00:45:21]: Okay, so we have the main overarching kind of question for the general discussion, which is that it kind of seems like in all three of our works, bias seems to be a key issue in communicating the information or releasing the information to the public, whether it's with antidepressants, or the neural herd behavior and corporate science companies, specifically like Theranos. What do you think about bias and the role it has in your specific research area? Why don't we start off with Isabella?
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Isabella [00:45:52]: Yeah, sure. I think bias does play a role. I think that's why a lot of the research articles that I found were "Further research needs to be conducted, however, blah, blah, blah." I think that's why even though things were inconclusive, articles led to one side or the other. And I think a lot of it does have to do with overall reputation and, background experience. I didn't really talk about it, but there's a lot of hesitancy regarding effectiveness and dependency on antidepressants. And a lot of researchers who suggested that people do get dependent on it, and it wouldn't necessarily be the safest thing to take are people who don't necessarily work with pharmaceutical companies in any way, whereas people who did, or they had some affiliation, they still suggested that they should be taken. I mean pharmacies get profit, right? I think a lot of that came into perspective after reading David Healy's skepticism and his article, because he's one of them. One of his jobs, or like what he founded, raises awareness for how pharmaceutical companies sell drugs by marketing certain diseases and disorders and working with certain, academic opinion leaders and essentially trying to credit it. So, I think that there's a lot to do with ethics, right? It's a lot.
Seohyeon [00:47:38]: So, do you think there's bias in all those pharmaceutical companies?
Isabella [00:47:44]: I think so, because on one end there is a genuine interest in the public and their health, whereas but you also have 'Okay, this is our job, this is how we make money', and some people are aware of that and bring that up and that affects other research.
Sama [00:48:06]: What about you Seohyeon?
Seohyeon [00:48:16]: Bias? I guess bias exists everywhere. Every human has biases. I mentioned it in what goes into the “And” part of the framework, right? Some people have bias that their conformity is a good thing while they think that other people's conformity is a bad thing. I guess that bias causes people to keep conforming.
Sama [00:48:38]: I think companies might also be biased, right? I'm sure the companies for the Stanley cup would not necessarily want the herd theory being out.
Seohyeon [00:48:47]: Yeah, I don't think so.
Sama [00:48:48]: They made a lot of money.
Isabella [00:48:49]: Yeah, that’s true.
Seohyeon [00:48:50]: So, the bias kind of makes people think not in a rational way. They can't decide based on their own opinion because of their bias. I guess that's one of the reasons behind the herd behavior incident and all these societal problems that stem out of herd behavior. There's also a study that shows that people who are overconfident actually don't conform at all. They lead the way because they're too sure in their decision, which means they don't... Doesn't that mean they have bias?
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Sama [00:49:37]: I mean, yes, but I feel like that bias maybe counteracts the other bias, neutralizing it, I guess!
[laughter]
Seohyeon [00:49:43]: I guess that's another bias that counteracts the bias. So yes, bias affects people when they're making decisions, which I guess connects to your study of bias and the general public when they kind of didn't believe the scientists who criticized Theranos.
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Sama [00:50:05]: Yeah. Bias was implicit, and it was there throughout Theranos when the events were unfolding. But you never really notice it until you look back.
So like bias with a conflict of interest as a scientific member. You're a member of the scientific community, being on the board of Theranos and not declaring that conflict of interest when it's a huge thing for Theranos. It's blood testing company and you've got millions of Americans using it or being tested by it. You're letting that bias get to the best of you, especially when that bias can change into stubbornness, where you're biased, but you don't necessarily- and it happens to all of us- notice that you’re biased and you kind of like justify it. You're like "No, well, the reason that I'm thinking and I'm firm with this is because it's grounded in rational or logical thoughts". Where it wasn't. If the scientists just took a little step back to be like "Whoa, okay this is what they're saying about Theranos, and I know I'm benefiting from Theranos. What is the bigger picture and how do I deal with this?" I feel like that's a big thing.
Isabella [00:51:15]: I think a lot of this bias mainly has to do with transparency, right? I mean, that's what bias essentially really is. Speaking of transparency, Seohyeon you have mentioned the deficit model, right? Transparency and filling the gap between the general public and scientists. I mean that's talked about a lot, but I feel like Theranos kind of brings up transparency in general within higher authorities, so like investors and scientists right before the general public, I guess, if you look at a hierarchy, people who are higher up. It could be applied, no?
Sama [00:51:58]: Yeah, I do agree. I feel like the deficit model doesn't necessarily need to be thrown out the window completely. It is, I think, in my opinion, very helpful in laying the foundations, because I didn't know much about biotech companies until I undertook this research, so I kind of did benefit from the deficit model. But after that, you need to incorporate, as you mentioned, the ABT model, so that now that you have the information, you need to know what to do with information and how to think, and the next steps that you take when that information thrown at you. And so, I feel like you'd benefit from both the deficit and ABT model, depending on the situation.
Seohyeon [00:52:39]: Yeah. I feel like all our research show that there are many distinct ways to communicate science to the public, where Isabella talked about how you got to improve the education of the scientists, so that's one way to communicate science and one way to improve communication. Sama you also talked about all this big, big framework about, scientists, the scientific community and the companies, and all these development stage, the marketing, the post marketing stages. That's another unique way to improve communication.
Sama [00:53:25]: I feel like your ABT model could also, maybe apply to Isabella's issue, which is solving the antidepressant communication problem.
Seohyeon [00:53:35]: Oh. Would it?
Sama [00:53:35]: Would it? What do you think?
Seohyeon [00:53:37]: I guess if you... I might conduct an experiment on my family. I might use the ABT model and then I might try to convince my family.
[laughter]
Sama [00:53:48]: Let us know how it goes! So, we've got our first case study or small study for Episode 193. Stay tuned!
Sama [00:53:55]: I feel like this concludes our podcast.
Isabella: [00:53:58]: Yeah, I think so too!
Sama: [00:54:00]: Any final words?
Isabella [00:54:04]: Educate yourselves with science before you go on and assume. Don't produce a company and fraud the government of billions of dollars.
[laughter]
Sama [00:54:19]: Big no, no. Yeah, and science is always changing. The way that we communicate science is also changing, sometimes for the better, sometimes for the worse.
Seohyeon [00:54:28]: Yeah, I think so too. People have to kind of establish many different ways to resolve this miscommunication in science.
Sama [00:54:37]: Yes, and stay up to date!
Seohyeon [00:54:38]: We hope our research is going to help you…
Sama [00:54:42]: Gain a bigger insight into scientific miscommunication…
Isabella [00:54:46]: And maybe we'll hear more about miscommunication in general in the future and probably more solutions. Right?
Sama [00:54:51]: Yes, hopefully.
Sama [00:54:53]: Thank you so much. I hope you enjoyed the podcast. Have a great day!
All Three [00:54:57]: Bye!
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