Latest / Through the IDEA Lens / Who Gets to do Science?
Transcript
- speaker-0: Mm. You have an idea symbolizes curiosity and critical thought which are at the root of science and something that ought to be fostered in every human, irrespective of lived experience. Welcome to Through the Idea Lens, the podcast which brings science and inclusive society into focus. speaker-1: Thank you. Hello Mahadia. How are you doing? speaker-0: Hi Peter. Doing all right? Thank you very much. What about you? speaker-1: Doing well, this is our first recording of the Through the Idea Lens podcast. It's very exciting. And to get started, I just wonder if you can tell our listeners about yourself. You are Dr. Mahade Sukai, so tell listeners about who Dr. Mahariya Sukai is. speaker-0: This is so exciting. Okay. I'm gonna start by sort of doing a little bit of a different kind of introduction. That's because everyone who does anything anywhere on the planet is first and foremost a person and a human being. So I'm gonna give you a little sense of who I am as a person. So I am someone who loves to cook, who loves to read science fiction, who loves to hang out and listen to ocean waves. I like warm. Oceans, not cold ones. I love to spend time with my three and a half year old. Whose name is Megan. Whose name is Megan, yes. I I can count to ten and five languages. Braille doesn't count as a language, by the way. Braille is a coding system. I am a husband. I am a father. I am a son, a brother, a cousin, a friend, a dad, as I said. I am a person who was born blind. I was born in Guyana, South America, and I identify as living being with low vision today. I'm also autistic. And I am a PhD in molecular biology and have been a quote unquote practicing scientist for I'd say the last twenty eight years, more or less, since I started my masters. And so so I've I've been it's not a it's not a common term. People don't speaker-1: Mm. speaker-0: People don't talk about someone practicing science, but but I am I am an active scientist. I'm an active researcher. I've spent a bunch of my time in scientific and research strategy and scientific and research leadership, but I actually still do science, right? So so the practicing scientist. You're a practicing lawyer, you're a practicing doctor, you're a practicing scientist, you're a practicing plumber. Anyhow, that's that's a little bit about me. I am I'm someone who doesn't actually do genetics, the field that I was trained in. anymore. I teach it when called upon to do so. I can certainly understand it. But I've I've moved away from genetics and cancer biology and moved into other spaces that have to do with accessibility and science and how we understand systemic accessibility, organizational accessibility, and I care a lot about population health and population data science and quality of life for people with disabilities. And as my career has advanced, I've changed the things that I specifically do and just let that arc go according to the natural trajectory of where my career took me. I I didn't necessarily intentionally force it in any given direction. I'm a researcher first and foremost, scientist first and foremost from a professional identity perspective, but I've also been an executive for the last number of years and have been in the nonprofit sector as a volunteer and then as a senior leader in organizations. I'm affiliated with academia and I work in the private sector. Now I end with sort of the actual job title that I have a chief operating officer and chief scientific officer of IDS DEM. That speaker-1: a wonderful introduction. Hadio, you are a lot of things. As you rightly said, all of us can be a lot of things. So tell us about the idea STEM. speaker-0: Idea STEM is an organization that that was founded in 2020, in the early days of the pandemic. It was founded with a particular vision, particular ambition in mind, and that was to improve and really facilitate the accessibility and inclusivity of all things science, technology, engineering, and math related. And when we think about that, we think about STEM education, we think about STEM employment, we think about the ways that STEM impacts societies. And we think about how and whether people with disabilities genuinely are included in those spaces, either as students or as teachers or as employees, or as people who are accessing healthcare, or people who are accessing the benefits of STEM, or even people who are working within the space. And so so we really founded the organization on the premise that we're not doing as well as we can in these spaces and we need to get better. And the experience the lived, living and professional experience of being scientists with disabilities, being accessibility professionals, being researchers, educators, that's an experience set that it can actually help the world. Now as Idea STEM has matured, actually sort of synchronized its mission and vision a little bit with the reinforcement of science as a fundamental human right. Mm-hmm. And the idea that every person in the world has the right to access, participate in, and benefit from science. And every person in the world includes the one fifth of the population who live with disability. speaker-1: Yeah. What is idea? You talked about accessibility, yeah, that's one part of idea. What's the rest of idea? speaker-2: Idea. speaker-0: It is a term inclusion, diversity, equity, accessibility. And the idea behind idea is that at the end of the day, the thing that matters the most, the outcome that is most important to us is that everyone is included, that everyone has that not just an opportunity to participate, but rather that when they're participating, that the participation is mutually beneficial, that the participation is to the fullest extent possible. That you are actually included within the space, not merely tagged onto the space because somebody said you should be. And so inclusion first, diversity second, equity third, accessibility fourth. And so if a space is truly inclusive, then it will welcome diversity. It will operate on principles of equity. And foundational to all of that are the principles of accessibility, hence the term. And so when we were thinking about the name of the organization, idea stem a few different intended meanings, obviously inclusion, diversity, equity, accessibility, and science, technology, engineering and math. So idea in stem, but then the stem is the base, the flower, right? So so we can we can get into gardening metaphors. Idea as a word actually means something else, particularly in the context of science. Idea is the place that that gives rise to the questions that we ask in research. It gives rise to the hypotheses that we make about the world. And to have an idea symbolizes curiosity and critical thought, which are at the root of science and something that ought to be fostered in every human, irrespective of lived experience. speaker-1: Well, that's exciting. And along the lines of growing and growing idea, we've decided to do this through one way being a podcast. So tell us about the podcast. What's your expectations for the podcast? speaker-0: Some of the conversations that we're starting to have, Peter, are conversations that not just about accessibility, but rather about science. And this sort of idea had its genesis in a recognition that I had about ten or twelve years ago. And in one of the pieces of work that I was leading ultimately led to sort of this notion of let's come together on this conversation around idea and STEM. In one of those pieces of work, what became clear was that the conversation around accessibility and disability, and it was in the context of graduate education. The conversation around accessibility and disability was really a conversation around the future of graduate education. What's it mean to go to graduate school? Right. What does graduate school look and feel like for everybody, not just for people with disabilities? So then absolutely from an accessibility advocacy perspective or a disability advocacy perspective, it's important to champion accessibility issues. But fundamentally, when we start to ask those questions, we're going to get at The root philosophies of what's it mean to do science? What's it mean to be a scientist? And those are big questions, particularly now when you know scientific literacy is not as strong as it could be or should be. It's under challenge. It's under challenge, exactly. There's a information has been democratized to the point where there's no longer a filter on it. And so speaker-1: Villa. speaker-0: If if you're not careful in you query Gemini or or ChatGPT, AI doesn't have a filter the way that we as humans have a filter. And when Sarah gets to do our work for us, you take away some of that information filter. There was a once upon a time where it was like, okay, if something was written up as a technical report, then you trust that its quality more than you trusted an op-ed piece in a newspaper. Right? At least from the perspective of of what's inside there, what's been fact checked and what's been validated and quality of the information. And op-ed pieces in newspapers are perhaps a little bit of a bad example, but op-ed pieces written on somebody's website aren't referenced. And so there used to be sort of this layering of information sources and And what we considered quality and what we considered trust. And the interesting thing is a lot of that's gone away with the democratization of information and proliferation of social media channels to disseminate information. And I think within that space, understanding what science is and understanding who does it, understanding the importance of making science accessible and inclusive, these are no longer just conversations about including people with disabilities in science. These are conversations to get at the fundamental premise of what is science? What is education? How do science and education contribute to society at large? And so the thought with the podcast was really to sort of say, you know what? This needs to be a broader discussion. It's not only about accessibility for people with disabilities. Accessibility for people with disabilities is central to this larger issue of what is science today? What do we want science to be tomorrow? How does science impact society? How do we learn science? How do we teach science? How do we do science? How do those things manifest in a world where things change constantly? We are three years on the other side of a global public health emergency called COVID 19, climate change, artificial intelligence. Things are happening that are influenced by science, things that are happening as a result of science, but also things are generally happening in the world where science plays a significant role. We need to be able to talk about those things through that lens of everyone's included. The podcast is intended to be those kinds of conversations. It's intended to spark a little bit of debate, perhaps a little bit of controversy. It's also intended for us to understand some intersectionalities that that don't often get talked about when we sort of drill down on the advocacy piece. speaker-1: Well, that sounds ambitious and wonderful. So I'm really looking forward to these conversations. And without any further ado, we're going to start our conversation with Shaheen Ghost, where you and Shahini are talking about inclusive science is good science. Let's get into it. speaker-0: Let's get right into it. speaker-1: To the podcast. I'm here with Maharia Sukai and our guest. Mahario, why don't we just jump in and you can introduce the first guest of our first podcast? speaker-2: Thanks so much, Peter. I'm really, really pleased to introduce Shohini Ghose, who is with us today as our first guest. We've agreed we're not gonna do formal biographies. Everyone can review formal biographies on the podcast page, get to know Shohini's bio as we're going through the conversation. I think Shohini is is gonna come out in many shining waves in this conversation. But Shohini, thank you so much for being here. I'm gonna give you a chance to just say a couple of words of greeting before. speaker-3: Thank you so much, Mahadeo. And boy, what a pleasure and an honor to be your first podcast guest. I guess that will be the way I'll introduce myself from now on. I'm Shohini, Mahadeo's first podcast guest. That's it. That's my bio right there. speaker-1: So Shaheeny, today's theme is inclusive science is good science. That's what we want to be talking about today. So I'll throw that over to you. Is that something you would agree with, disagree with? What's your experience with that statement? speaker-3: Yeah, it it's a simply it seems to be a simple statement, but actually I think there's a lot there to unpack. So I guess that's why we're doing this podcast. I guess from my point of view, this is something that is definitely a question I can answer more f from a personal lens as well as more of a broader lens. So I'll get into my personal point of view first. So I actually was born and raised in India where From childhood I was always fascinated with science and math, solving puzzles and mysteries, which eventually led me into science. And then I decided to be a physicist, which, you know, I didn't really know what that actually meant. But then when I was in grad school and I looked around in my classrooms, I realized that not a lot of other, you know, little brown girls must have th dreamed of being a physicist because there weren't a lot of women of color in my classrooms. So that's when the question of identity and inclusion is I think that's when I as personally in my own experience started understanding a bit more about what that actually meant and how it impacted those of us who were in the classroom because it certainly did impact me in the sense that being isolated is it's always more difficult to be successful, whether it's in the classroom or in your career. You question yourself all the time. Definitely there were many, many experiences where I was treated differently. And therefore, my participation and engagement in science was not the same, perhaps, as some of my other colleagues. From that personal lens, I think that inclusive science is good science, means to me that not feeling included is actually when certainly science absolutely suffers, in the sense that there are so many other things you have to be dealing with. That to me, inclusive science is science, because not you know, having that opportunity to focus entirely on science means that you're not going to be able to rigorously put all of your attention and all of your potential into doing the science. So I guess for me it's the flipped script that I think is a more strong statement that all good science is inclusive science. speaker-1: Well, there's a lot that we want to talk about there because we know you're talking about when it's practiced well, when it's not, that kind of thing. So let's get into that. But first I'll ask you, Maharia, this is your theme that you picked, inclusive science is good science. And I'm wondering a couple of things. First of all, what does that mean to you and what do we mean by inclusive in this context? speaker-2: Great question, Peter. So my reflection on this is we talk about good science a lot in scientific spaces. In research, we talk about good research and who defines what good research is. And we talk about good science being science that's published. We talk about good science being science that's funded. We talk about good science being science that has received research ethics approval. But those are things that don't always make a whole lot of sense. And and so it's it's really hard to put a finger on, well, what is good science? And there's a lot of people who like sort of tautological definitions. Good science is good science. Doesn't necessarily compute either because you know we're we're just going in circles. And so the idea that good science is inclusive science or inclusive science is good science. And Shahini, I I like the way that you inverted it, I think gives us the start of a definition. And it's a controversial definition because what we're basically saying is there is such a thing as science done badly, and it doesn't matter If it's funded and it doesn't matter if it's published and it doesn't matter if it's got research ethics, it could still have been badly. What matters more is the inclusion of the involvement of many different perspectives in the doing of the science. So inclusive science from that perspective. And where applicable, for example, when involving human beings, the science that's done takes into account the vast breadth of diversity of lived experience of human beings. And so when we do science that is for everybody. when we do science that has taken into account everybody's lived experience, when we do science that's done by or that involves a diversity of thought, a diversity of perspectives, a diversity of lived experience, then we've done good science because that science is inclusive. And so so I I would sort of plant that as a bit of a controversial stake in the ground, knowing that there's lots of folks who might listen to this who are going to cheerfully disagree. speaker-1: So disagree in what way, Mahare, I just wanna be clear about that point. Disagree that need to include everybody? speaker-2: Well, I'll give you a couple of examples. When the Human Genome Project was first done, the Human Genome Project was actually done on the DNA from five human beings, all male, all white. And this first draft human genome published in three or two thousand and two was the benchmark by which genomics science was built. But now I don't know, we're on draft forty something of the human genome and we've gone back and and actually realized that Five human genome sequences do not a consensus make. And we started to actually expand. And some of the things that were considered to be the default sequence of the human genome have been changed because we recognize that that it was only five human beings, all of a single biological sex and all of a single ethnic group. And so we it's important to make sure that we are being representative of human beings as as biological and social creatures in in many aspects of of scientific research. And folks will push back and say, well, a human being is a human being. So what's it matter if you were born in Guyana or you were born in Ghana or you were born in Georgetown, Ontario? What does it matter if you are South Asian by ancestry or you are Western European by ancestry? And at the end of the day, again, in in the biological and social spaces, a lot of these things actually do make a bit of a difference. And if we don't understand them, then we're not able to interpret the results properly. So there's sort of been this perspective historically that the human bits don't matter, the things that make us people don't matter, but the things that make us people actually matter a great deal when we're actually speaker-0: Be talking about people. speaker-1: Yeah. Okay. Shaheeny, I'll ask you, when have you seen it practiced well? What maybe some examples from your own experience where inclusive science science has really been practiced well and and even from your own work? speaker-3: Actually, before we get to that, can I jump in on the previous topic? One more point just to make, you know, make it clear what we really mean, what we're discussing here, is that actually inclusion, ⁓ you know, access to science and benefiting from it, participating in it, this is actually a human right in the sense that it's actually in the UN Declaration of Human Rights. It says that we all have that right to. be part of the culture of society, the part of participating in science and arts and benefiting from it. So in that sense, inclusion being a human right doesn't mean inclusive science requires it it doesn't say something like, you know, it's your it's a human right to, you know, access good science. It's it's your right to do science, however badly you want to do it. So the reason I want to bring that point up is that the idea is Because of this being a matter of social justice, being able to be curious, that is a universal human quality. And nobody has the right to say, no, you can't be go and you know explore this because you're not good at math. Therefore, you're not going to be able to do good math. Therefore, you can't be curious about math and participate in it. So inclusion should extend beyond whether or not you do good science, is what I mean. However, this is why I want to reverse it and say, if Somebody says, here we go, here's the human genome project. This is good science. That is actually a testable statement because one could ask, has it actually followed the scientific method? And what's the scientific method? You have to be rigorous. You have to examine your data, make sure it is predictive, and actually satisfying the criteria of what we mean by holding up to all of our rigorous testing of what it can predict, what it can describe. Who, if it's applied to humans, for example, the Human Genome Project, whether it does describe all humans. So this is what I mean by saying that when we talk about good science, we can absolutely ask: who does good science require inclusion? And there I think the answer is absolutely yes. Good science requires inclusion because without inclusion, you're actually failing the tests of the scientific method, which is you're not being rigorous. So in a way we shouldn't have to always say good science is inclusive science. Good science is the scientific method. And that by definition is already should be inclusive. We don't apply it very well that way, but that is already built into our criteria of the scientific method. So I just wanted to put that out there. And I know Mahadeo, you will probably find something to say speaker-2: ⁓ Vigorously bobbing my head. But there's there's actually another thing about it, right? In science, we have a responsibility to declare the limitations of our work. And it's actually okay. This is the thing that we are somehow conditioned to forget. We can talk about how we get conditioned to forget stuff, but legitimately okay to say, you know what? 90% of autism studies have been done using boys as the research participants. Therefore, all of the behavioral speaker-0: Therefore speaker-2: Traits for autism that are out there in the literature are coded to word gender male, not necessarily gender female. So a limitation of autism diagnostic criteria is we're more likely to diagnose boys than we are to diagnose girls. It's actually okay to say that. Legitimately, it's okay to say there is a limit to what we do. speaker-3: So I feel like that's so w yeah, that so you're right. Basically what we're saying here is that something that is not fully inclusive, size that is not fully inclusive is limited size. Maybe that's another way of thinking about it. speaker-2: Yeah, exactly, right? But the challenge is that when we write funding applications, nobody wants to hear that what it's based on is limited. When we write a paper for publication, we always love the flowery concluding paragraph that says this is going to apply to everybody. And when we teach graduate students how to write their stuff, we teach them to say, here's the science fictional approach to how this is going to change the world. And so we are conditioned to not acknowledge the limitations we do. Exactly. We're incentivized. speaker-3: we're incentivized not to. So right. So it's systemic. And this is I think one of the key problems that on an individual level, no matter how much we try to be inclusive, we are actually often penalized for it. speaker-2: That's exactly right. I think there is many, many deeper layers to that conversation. We may not get to all of them here today. But I think th the key point is we're disincentivized from acknowledging limitations and we're also disincentivized from attempting to be fully inclusive in the work that we do. And so it becomes easy to sort of lose track of well, there are limitations because we couldn't have been inclusive, or there are limitations because we were not, right? Yeah. speaker-1: This is great. We've got off to a good start here in terms of what this is. And just maybe one more concluding question on that before we kind of move on to to how it's practice. Why it's a funny question to ask, but why are we only talking about this now? If this is something that's been in I think important all the way along, and I think we know the answer, but why are we only sort of talking about this now, the the the important role that inclusion plays in science? speaker-2: Shahini, do you want to go first? speaker-3: Sure. Well, I'm not sure if that we're only talking about it now. There's been folks who've been always been talking about it. Throughout history, there's been some folks who've had the, you know, platform to talk about science and others who haven't. And those who typically are not given the platform, of course, have always been speaking out and saying, Hey, I'm here too, inclusion. Except we don't know that they were speaking out about it because that's, you know, the nature of who gets a voice and who doesn't. So absolutely there's always been a vocal minority. But now I think that there's all kinds of reasons for this focus now on inclusion. You know, there's the political climate, which is of course keeps changing. For and against this. You know, also historically this is work that's been done for so long, even though it's been done in silence, perhaps hasn't got the spotlight. All that we have achieved till now is based on all that. So the fact that now people are paying more attention to it is because there's been that long history of the unheard folks who have been working on it and pushing and showing that their contributions also matter just by improving science, by contributing and transforming all kinds of fields and proving that th these are important pieces. Not to mention these days there is this whole financial incentive. speaking of what does drive change, what doesn't, if there's financial benefits to be had where if a company can actually make more profit by having diverse teams that actually work better, they're going to do it. So perhaps not the best reason to focus on inclusion, but there's all kinds of different ways that people find to, you know, be part of the conversation. speaker-2: You said something that resonated, Shaheene. Lots of people have been talking about this for a long time without a platform. And we're also at a time and space where democratization of communication channels and democratization of information, yes, it's gotten to a point where misinformation can absolutely be a thing. But it's also gotten to a point where you don't necessarily need the platform of tenureship, the platform of a a university faculty appointment, the platform of a large organization backing you to be able to say something. And so now the voices that didn't have democratic means to communicate previously now have democratic means to communicate. Hence, I mean, through an idea lens podcast. And so why not take full advantage of it to actually have a conversation like this that most people will I shouldn't say most people will shy away from, but in the context of how science is done, like these are not conversations that tend to be establishment conversations, right? Because, you know, there's a lot that goes on about whether publication and peer review is done ethically and fairly. There's lots that goes on around funding and and how peer review and funding is done ethically and fairly. There's lots of going on around the ethics of AI and research and the ethics of simulation of data and all sorts of fun questions that Are part and parcel of the question around good science being inclusive science. And they're important things to think about, they're important things to talk about. Now's the time to do it because now we're sort of approaching, if we haven't already, past the sort of point where there's enough public trust in science that the conversation around how science is done and how science is done rigorously, and how the scientific method speaker-0: Lack of public. speaker-2: Which I'm gonna say something controversial. The scientific method is something that holistically should transcend all cultures. And I'm not talking about the Western conceptualization of the scientific method. I'm talking about the the more holistic, humanistic, what's it mean to actually do science? That kind of scientific method. And so we're in a space where we need to be able to talk about the doing of science and the results from science and the benefits from science and how we access science. And we who think about science. through the lens of inclusion and equity need to be part of that conversation. Otherwise, there's going to be even more potential for mis and disinformation and a degradation of scientific literacy within the community at large. Yeah. Which is about as grandiose a statement as I'm going to cure cancer in fifteen years. speaker-1: We're gonna stop the discussion there. But join us next month as we continue to discuss that inclusive science is good science. Or as I think as we've established by now, good science is inclusive. Talk to you next time. speaker-0: Thank you for joining us for this episode of Through the Idea Lens. The conversation doesn't end here. Get social with us on YouTube, Instagram, TikTok, and Facebook at IdeaSTEM Canada. You can also learn more about our work at www.idea-stem.ca, and you can email us directly at info at idea-stem.ca. ⁓ Until next time, keep looking through the idea lens.