Subscribe
Share
Share
Embed
“Research Ethics Reimagined” is a podcast created by Public Responsibility in Medicine and Research (PRIM&R), hosted by Ivy R. Tillman, PRIM&R's executive director. Here, we talk with scientists, researchers, bioethicists and some of the leading minds exploring new frontiers of science. This season, we are going examine research ethics in the 21st century -- and learn why it matters to you.
Simplifying Science with Amanda M. Dettmer, PhD and Robert Nobles, DrPH, MPH, CIP
===
Ivy Tillman: Welcome to Research Ethics Reimagined, a podcast created by Public Responsibility in Medicine and Research, or PRIMR. Here, we talk with scientists, researchers, bioethicists, and some of the leading minds exploring the new frontiers of science. Join us to examine research ethics in the 21st century and learn why it matters to you.
I'm your host, Ivy Tillman. Let's dive in.
I wanted to take a moment to introduce myself. And welcome you to our first episode of Research Ethics Reimagined. My name is Ivy Tillman. I'm the Executive Director for Public Responsibility in Medicine and Research, and will be the host of our podcast. Before we begin our first episode, I wanted to share a little bit about myself and why I'm deeply connected to our mission here at Primer.
I am a mother of four amazing Boys, a research ethics professional, a wife to an incredible engineer, an active community member, an advocate for women and girls, a teacher, a daughter, an aspiring beekeeper, that's a story for another day, and especially a lifelong learner. Early in my career as a high school biology teacher, I witnessed how education empowers and opens doors of opportunity for my students.
I saw that science was not so much a career. It's not solely about memorizing facts and taking tests. It's about curiosity, discovery, and making connections. I love these connections. From teaching to navigating the complexities of research ethics as an IRB director, my career has been shaped by a commitment to bridging gaps.
Fostering understanding and helping others make connections, whether advocating for underrepresented populations or engaging communities. In discussions about research, my aim is always to elevate voices and create spaces for growth and learning. My passion for understanding has led me here today to encourage you to discover and connect with our guests as we ask questions about what science means to us Every day, we are impacted by science and research without even realizing it.
I am pleased to welcome you to Primr's podcast, Research Ethics Reimagined, where we hope each conversation is an opportunity to enlighten, inspire, and connect. I'm excited to host today's episode.
Today we have with us Dr. Robert Nobles, who's an epidemiologist and the vice president for research administration at Emory University, and Dr. Amanda Detmer, who is a research scientist at the Yale Child Study Center and the Yale School of Medicine. At Emory, Robert promotes research growth through oversight and execution of the strategic direction of an expansive research portfolio across the university.
Amanda leads the Human and Animal Integrated Research Lab and the Yale Child Study Center. She's a comparative psychologist and behavioral neuroscientist. with over 20 years of experience studying non human primate models of child health and development. I'm pleased to be able to have this conversation today with Robert and Amanda, and to share it with you, our listeners.
Today our conversation will focus on building and maintaining trust in research and science. Since this is our first episode, we'd like to encourage our listeners to visit Primer's Research Ethics Timeline, which serves as a guide for understanding the pathway of these ethical frameworks that govern.
animal and human research. For today's conversation, we'll discuss some of those ethical principles and how they frame the regulations that we know of today, but we'll also touch on what ethical research looks like in the 21st century as we work to rebuild trust in research and science. So, we'll get started.
Thank you. My first question is, is there a disconnect between the individuals who implement ethical frameworks for conducting research and the community that receives and benefits from such research?
Robert Nobles: That's a really good question. I, I think the answer goes both ways. There is a disconnect between the individuals that provide oversight activities.
But they happen to be part of the communities that benefit from the novel and innovative activities for which that we, we garner out of research activities. But I think what happens with many of us is that we live in multiple worlds. We're, we're part of multiple communities and oftentimes we don't, We don't really make the connection of us being a community member who benefits and also be the regulatory bodies or, or compliance bodies that, that enforce ethics and the values of, of carrying out research responsibly.
And so I think there's something to the question, uh, that we, we collectively need to. embrace our holistic selves, uh, in the review and the dissemination and the sharing of, of research related activities. And to that vein, and Amanda and I had an opportunity to talk about briefly primate related research.
I wonder from her, How much does she share with individuals about the value of non human primate work, and to strangers on the street, or is it something that are we keep our science to ourselves?
Amanda Dettmer: Yeah, great question, Robert, and Ivy, too. And I think to answer your question first, Ivy, and to piggyback off what Robert said, I think in the animal research realm, there's, it's a little different, right?
The, the people who oversee research ethics there are obviously, right? Very different from the animals who participate in the research. However, I do think That it often is the case that the people who, uh, oversee the animal research ethics are the ones who do eventually and ultimately benefit from the knowledge that is gained from animal based research.
But what a lot of the public doesn't realize is the animals themselves often can also gain. For example, there may be medical developments that are trialed in animal models, Before moving on to humans or that are are just child and animals to improve animal only health. And all of that research requires ethical research oversight.
Um, and so, you know, I have a pet dog, right? When I go take her to the vet every year for her rabies vaccine, uh, I do a little silent to the animal. Uh, researchers who developed that vaccine, who continue to improve medications for her, uh, and to improve her health. I think the community differs in a little bit of a different way than with human based research, but in a valuable way, nonetheless, and then to answer your question, Robert, how much do I kind of just talk to people on the street?
You know, I'll say more than. I used to. It increases, it's increased over the last several years. And the reason for that is largely a personal professional experience I had where the research group I was involved in, we were targeted by anti animal research activists and it really drove home the need to.
Just be very open and upfront and welcome questions and conversation. And I've actually found that when I lead with that now, you know, like the elevator conversation, what do you do? Most people in general are like, Oh, wow. Tell me more. And. It opens up a great conversation.
Ivy Tillman: I think you brought up a really good point, Amanda.
It's almost providing this community of really dedicated ethics professionals with an elevator pitch. Because oftentimes we don't know, I say we because I still feel a part of the community, we don't know where to start. And so if you were to ask or to design an elevator pitch, Robert and Amanda, what would that sound like?
I know I'm putting you on the spot, but this is a really good one. Related to research ethics, or? Yeah, related to research ethics. The work that
Amanda Dettmer: we do, or?
Ivy Tillman: Both, in the sense of, you know, going back to the original question of the disconnect. So we recognize that a disconnect exists. How do we?
And so could it be done through like, this is what you would say, or this is what you would, you know, this would, what would spark someone's interest? Because you said that when you begin to have that conversation, they want it to know more.
Amanda Dettmer: Yeah. So coming as an, uh, comparative psychologist and animal based researcher, this is not.
at all, probably similar to anything Robert might say in an elevator, right? Or at the park or whatever. But when I get the question, so what do you do? I generally answer with something along the lines of I'm a behavioral neuroscientist and I study non human primate models of child health and development.
And it either goes kind of one of two ways. People are interested in the child development and like, Oh my gosh, tell me about this thing my kid just did the other day. Or they hear the non human primate and they're like, Oh. What kind of primates? And then they'll ask, why do you study them? And then I then feed off of the questions that.
They asked me to, to have a continuing and open conversation.
Robert Nobles: Yeah, it's a great question. You know, when I reflect on that, I, I am very, very proud of what I do, but I am very discreet to individuals that don't know me not to overshare, uh, which is, which is very interesting. Um, most times people ask me what I do and I say, Oh, I'm an epidemiologist.
Right. And then they think I'm a. I, I deal with the epidermis, uh, or I'm like, well, no, no, no. And like, so some people will say, well, what is that? And then I would explain, I used to track diseases. and be with the CDC. And that was more than 20 years ago. Uh, and, and, and then they, if they want to continue to engage, then I do, but it's very interesting.
Cause then it leads into, well, what do you do now? Uh, are you a professor? And I'm like, well, I used to be, but now I help people with research activities. And they're like, and then they get to want to know your title. And I try not to, this is not, The normal way of me trying to, uh, in, in academic settings, trying to explain what you know, or explain your title and what you do at an institution.
You're just trying to be a regular community member. Uh, and so, so I, I find myself holding back until other things happen where people are sneezing or, because I track infectious diseases. And so I, or they have. Spots on them or anything. I'm like, Oh, well, you should probably, uh, get that checked out. Uh, because I, I do find myself not overly disclosing and it's very interesting because one of these conversations happened, uh, during COVID and, uh, I mean, I would explain the individual, like you really don't need a mask outside, uh, dilution is the solution to pollution.
There's this, okay, maybe I'm going too far. Uh, but, but my wife would have these conversations, the communities would have these conversations and I would stay. Quiet, unless they ask me a question and my wife would say, he knows the answer. He's just not telling us because we have to ask him directly because I don't want to squelch just common conversations.
And then I choose not to engage. Uh, but it's, it's very interesting that I try not to overshare, but in thinking of the purpose of this podcast, we probably should share more. Because I think that us integrating into our communities and making the connections where people understand what we, what we do, what we stand for, how we carry it out and how sacred research is, is something that we probably should do more of as, as individuals within our communities.
Um, uh, and, and instead of just trying to blend in, I think I try to blend in a lot and not overshare. being doctorate educated, blah, blah, blah, blah, blah, right? Like, it's just not a, it's not what I lead with.
Ivy Tillman: Mm hmm. I think that's fascinating to consider how we are citizens and community members as well as, you know, for, for you all scientists and ethics professionals, but really beginning to integrate these conversations into our communities.
Because You know, trust is built with these conversations, right? And transparency. Moving into our next set of questions, we're living in a time where we face a declining level of trust in our institutions across the board, right? And we've seen that science and research are not immune from that. The pandemic, of course, thrusts science into politics in an unprecedented way, but we recognize that there is a lack of trust in scientists and research as a whole, what do you think is driving that decline?
And, and the trust in science, or I can ask it to you this way too, or think about it. Was there ever a high trust in science and research in our country? I've been asking myself that question
Robert Nobles: lately. I'll, I'll jump forward and, and I, I, I think we had high trust before I was born. This is what I think. This is what I think.
Uh, and, and this is the disconnect that I had even, even growing up and, and with some scientists today. Um, we learn a lot and we become experts in certain fields. And we find ourselves not being able to communicate with individuals not in our field about the science and the things that we know. And And what I, what I firmly believe is that you have to make a connection.
And so, so some of our scientists, or at least the scientists who are get on TV or, or, or sharing, some of them don't connect with the audience. They're, they're seeking a different audience that can actually receive the information from them. And in, when we, in, when we're all not talking, um, uh, we, we leave the risk that the science is above everyone.
Everyone and you have to be on this platform to get it, which then allows everyone else to draw their conclusions on what they believe in and the watered down versions of information that we receive in some of the media outlets. And so I think we did trust science at a point of time when we, when we need science to move forward.
And I think we're at that time. Now, the challenge is, is that it becomes polarized and political of scientific messaging. And then. And then we lose our audiences, right? And, and so I think collectively we could do a better job at simplifying scientific messages, even though that, that simplification makes the message imperfect, but at least it's digestible.
Amanda Dettmer: That's such a great segue to what I thought of in response to this question, Robert, which is, I think there's a few systemic components at play here and one is this seeming, it seems to be like a gosh just a omnipresent Desire or even need for the soundbite.
Ivy Tillman: Hmm.
Amanda Dettmer: And true. This is the society we're in now.
Uh, we weren't always that way. Right? When you think about how we consumed our media, probably back around the time where Robert, you feel like we trusted science as a society. We read newspapers. Mm-Hmm. . That was the only way to get our news. We had to sit and read and digest. Now everything's at our fingertips and we, if it's not in one or two sentences, forget it, you're not going to hook the reader or the consumer or whatever.
And it's a disservice in a lot of ways, I think, because that's science is hardly ever that simplistic. So the challenge then becomes how can we simplify it? Um, And it takes a lot of work. It takes training that we don't get. This is another part of the system. As scientists, we don't get this type of training.
We're trained to conduct the research or you don't get communications degrees, right? Or social media classes. These are all things that we have to do on our own time extra that largely are not incentivized by the institutions that we work for, right? Where the things that are incentivized are. Research publications and grants, largely.
Teaching and service to your institution. So there's that systemic issue. Have you heard of the phrase, all research is me search, where like researchers will tend to tackle problems that have personal relevance to them, right? So this statement is a little bit of me search or irrelevant. I'm a parent of two school aged kids, I'm a middle schooler in elementary school and I'm watching them go through their science classes as children.
They have a mother at home who's a scientist. Do they like their science class? Not really. And when I hear about the things they're doing in their science classes, they're really not terribly different from what I remember doing at those same ages. And so then the system of even teacher preparation, right?
And, and it's like, I feel like the emphasis for the most part in advocating for STEM education comes later. It's maybe starting in high schools where you really get like a hard push and like, look how cool this can be. I think there's so much we can do from the earliest ages. I do think it's improving.
My children have learned about from kindergarten through now, scientists that I never would have thought of. Never even knew about when I was a child. And the, and different types of science, it's slow, but those are just some of the things I think are playing into the issue here. Well,
Robert Nobles: let me give you one example cause I mean, I absolutely agree with you, Amanda.
Um, I mean, cause my kids are going through science class and every once in a while they're like, oh, dad, you should come do the teacher science thing. And teach us about research. And I I've done it a couple times and they're abarrassed. I'm there, but I, I, I will say, I, I will say that it's not just that we're not trained, it's actually a bit taboo for us to simplify messages because my early research was, I mean, I, I, I find, I find ways for that people get sick and, and people die, right?
Like this, this is what I do. I, I, I, I find, I find risk, uh, as an epidemiologist and, uh, some of my early work was in Florida, uh, uh, monitoring enterococcus in the beaches. Of what would make beach goers get sick, right? And, um, and, and what I, what I found in, in the process of researching that and, and being part of the state health office and, and, and doing public notification is that I needed to make it very, very simple.
And so we, we came up with the flag system. I came up with the flag system where if, if bacterial levels are high, then it's red. It's yellow, and they still use the flag system. That's you? Yeah. I mean, that's amazing.
Ivy Tillman: Every time I take my kids to the beach, though. Exactly. Throughout the country, that's you.
Love it, Robert.
Robert Nobles: Yeah. So I did, I did that like in the 90s, right? Robert's flags. But, but look, but get this. When, when I got called from a media outlet. Yeah. Because I found when it rained, the septic systems in Florida leaked directly into the water and people, people got sick. Like, it was a, it was a direct correlation.
I was explaining all this, and I was, and Terracoccus has a bacterial indicator. I was doing all this stuff, and they're like, I mean, media people, uh, they got me, they said, this is really good. It sounds real scientific. How would you explain it? If I was a fifth grader and I'm like, Oh, I said, you wouldn't want to swim in your toilet bowl.
Would you? And they're like, that's perfect. Right. And then they walked away and drew a, drew a cartoon thing where a toilet bowl seat was sitting in the water. Two old people were walking by and they're like, uh, but we don't want to swim in a toilet bowl, do we? And, um, I had to tell, I had to tell the people, I had to tell, uh, the people I worked with and the supervisors, like, I think I just messed up.
Right. I got, I got, I got pulled into. Oversimplifying, but I, but it actually worked because it, it allowed for Florida to get a, in the Island of Key West, a 5 million appropriation to build a wastewater management system instead of septic systems leaking into the water and making people sick. And so I think, I think we have to figure out a way and, and, and, um, really, really change the dynamics of how we, how we operate within our, our academic and scientific, uh, communities.
that it's okay for us to, to simplify languages so that everybody else gets it.
Ivy Tillman: Wow. Great conversation and great examples. Um, I'll never look at the flags the same way, I always see your face, Robert, when I'm at the beach in the summer.
Robert Nobles: Just don't go swimming, uh, within In the toilet bowl. In the toilet bowl.
Within six hours of it raining, uh, because, uh, even wastewater treatment plants, they bypass the filtration component and it just flows directly into the waterways. Just kind of FYI. So don't, don't go streaming right now.
Amanda Dettmer: PSA.
Ivy Tillman: Yes. Yes. Along the same lines, my next question deals with really understanding that the current degradation of public trust can be attributed to a series of campaigns that aren't fact based.
And we know that. And they ultimately are not in the best interest of society. Many of them are ideology based movements with vested interest to undermine science. So how can we work to combat disinformation and rebuild trust in science, including considering these campaigns. And if we're specific against like the non human animal research,
Amanda Dettmer: so how do we do that?
Such an important question. Uh, because there certainly are more than one, uh, groups, anti animal research groups with very absolutist agendas. They want nothing but to, uh, get rid of. All animal based research, period. Stop, you know, full stop. I think a huge part of the solution is we cannot rely on individual scientists alone to do this very important work of fighting back, essentially.
Um, I think the best defense is a great offense. And, you know, institutions, universities, colleges, uh, federal agencies, et cetera, they hire scientists with full knowledge that they engage in animal based research for the betterment of society. Both animal and human society, and I think it's incumbent on those institutions to provide that strong offense on behalf of the individual scientist.
If you think about it, this is a completely off the cuff analogy, so it may fall apart, we'll see. But if you think of the scientific enterprise and the endeavor as a team, all science is teamwork, right? An individual player on that team, in a team sport like this, is not going to be able to, by themselves, Turning, turn this score around, right.
It's going to require a concerted effort and everybody working together, like not just teamwork, but like, uh,
Robert Nobles: kind of a unified approach. You know, it's really a collective approach.
Amanda Dettmer: You know, they, they all have, they're all playing by the same playbook and everyone has their role, but the institutions have to.
not only be on board with defending their scientists when they come under attack, but go above and beyond that and be proactive in the public communication about the importance of the types of research that their scientists do, uh, about providing engaging factual evidence as to the importance of this type of research, uh, and not hiding behind their, their walls and not putting the scientists out on their own to do their own defense.
And, um, That's, I have no idea how my analogy went, but it went great.
Ivy Tillman: I was imagining a basketball team. So you're okay.
Robert Nobles: It is, it's a full core press. Um, but, but let me, let me say, let me say, and I'll put primer in contention of what they can do as well. What I've seen, uh, 000 academic institutions we have across our country is everybody's trying to figure out Messaging, priorities, and what to share with their community.
What we don't have is a collective, and this is what Amanda was saying, a collective voice of what should be shared about animal research, or research in general. And, and when we think about institutions like Primer, um, NABER, and others that are, like, if you just think about institutions and organizations that are, are promoting positive science.
What those institutions don't do is give the playbook or the messaging to institutions to, to, to distribute
Amanda Dettmer: instead of
Robert Nobles: them needing to create their own message. Right? And so, so one of the things that, that I thought was very positive in the eighties was public service announcements. I don't know where they went.
Uh, right. Uh, let me, but, but if it made sense or if it didn't, Nancy Reagan always said, say no to drugs. And then you see the frying pan and it would come on in the middle of shows. Right. And what we, what we need to do is develop those soundbites because Amanda already hit on that. They, people have such small attention spans.
We need to give. A sentence or two of why we do research. Why do we do research with animals? What's the value? What did we create? What was produced? Why does research make our lives better? And if Primer did that and gave it to the member organizations and the, in the community, we will start to socialize this understanding of, uh, why we should say no to drugs and why we should say yes to research.
We're just missing the playbook was already laid out for us a long time ago. And we, everybody's not on Twitter and Snapchat and Tik TOK and this and that. And I wouldn't even know how to subscribe to all that, but, but, uh, uh, but, but people will still hear messages and be an authoritative, authoritative voice.
And a beacon of truth of why we do what we do, um, uh, uh, in research ethics for both humans and animals.
Ivy Tillman: Absolutely. Wow. We have our marching orders now. Yeah. I know we're coming up on time. I do have one more question that I do want to get in, so I'm going to kind of shift it real quick. Um, we had some leading questions, but, um, if we consider human research and talking about the Belmont Report and the principles.
The three principles that, you know, undergird our regulations. Um, we begin to think about vulnerability and how that's a concept in engaging particularly populations who do have some concerns around research and trust in research. So do you think the existing frameworks have fully captured the paradigms of vulnerability that exist today?
Robert Nobles: I don't, um, and, and then I'll let Amanda answer. So the answer is no. I, I think, At that time, uh, when the Belmont Report was created and when we had our code of Federal regulations, uh, they identified groups that had been targeted, uh, and, and, and not fully engaged appropriately to protect, right? Mm-Hmm.
And so, I mean, and so we have, we have infants and we have pregnant women, and we have prisoners. Mm-Hmm. Um, when I look at our communities, there's, there's vulnerability related to socioeconomic status. There's vulnerabilities related to regions. Um, there's vulnerabilities, uh, related to hierarchy, um, uh, access.
Uh, we, we have not fully captured the full paradigm to talk about how do you make a connection with these communities to be able to, Engage with them appropriately about the value of research and being involved and being included in being a participant and shame on us for not doing that, uh, because we're missing, we're missing the ability to find risks of individuals and the nuance of risk while we, while we try to pull people into studying these risks.
Uh, and so, so it's a challenge. Uh, and, uh, but I'll, but, but I want to turn over to Amanda, um, uh, to answer as well, uh, because I, I, I think, I think there's real risk with the same levels of vulnerability with, with our animals, um, and human, uh, populations.
Amanda Dettmer: Yeah, yeah. And I know that with the Belmont report specific to, um, human participants research, and I think this is a great, um, Example of the value of research.
It's because of research that we are continually evolving our understanding of vulnerabilities when it comes to any number of outcomes, right? Robert, you named some great examples. Um, socioeconomic status zip code turns out as a vulnerability. Um, Accessibility, which to, to services or lack of accessibility, which can also just be called privilege, right, or, or non privilege.
These are all vulnerabilities. And because of research, we're continually evolving our understanding of. What makes people vulnerable to illness, to poor health outcomes, to not responding well to treatment. And I think the onus absolutely is on us as, uh, researchers as a society too, as a whole to make sure that there are regular updates to documents like the Belmont report to ensure that we are protecting the most vulnerable people who are very likely to be the ones who will benefit the most from the research that we do.
Robert Nobles: Yeah. Including terminal illnesses.
Amanda Dettmer: Yeah. I mean,
Robert Nobles: when people are desperate for an answer.
Amanda Dettmer: Yes. They're much more
Robert Nobles: willing to do anything to help them.
Ivy Tillman: Yeah. Absolutely. Well, thank you. I think we're at time. We could talk for another hour. This is really fascinating. Yes. We need to have more conversations like this.
Absolutely.
Hanna Holman: Thank you for listening to Research Ethics Reimagined, a podcast created by Primer and produced by Syntax in Motion. Please subscribe and share with your friends and colleagues. To learn how to become a member of Primer, please visit us at www. primer. org. Be sure to join us next month as we continue our conversation with scientists, researchers, Bioethicists and some of the leading minds explore new frontiers
of science.