 Alright, hi everyone. I'm Alex Perlman. I am a bioethicist and an independent journalist and researcher and I'm so excited to be here today with my colleague Christy Guarini at the Biohacking Village at DEF CON. So thanks so much for having us. Christy, why don't you introduce yourself. Sure. Hi everyone. I'm Christy. I'm an assistant professor in the Center for Medical Ethics and Health Policy at Baylor College of Medicine and really happy to be here excited to share the results of the project that I've been working on with Alex. Yeah, we are so pumped to talk about this paper and what we really were looking for was to ask whether oversight of ethics was something that community scientists biohackers are interested in. If it turns out that that's the case, what forms any kind of oversight might take. And so, given that, you know, in these communities there are a lot of different opinions a lot of different backgrounds and ways that folks self identify we were really interested to see sort of what the attitudes were towards these questions. And then we're really excited specifically to be able to come and then talk about our findings with this paper, especially because we are really adamant in the research that we do that it's for the communities that we're listening to. And that's really what we're doing. We're just interested in what the attitudes are and then reporting that data back to the community. Um, so I just wanted to kick off in the beginning Christy can you tell us a little bit about how this project came about. Yeah, sure. I so I, I'm currently a grant funded researcher, and my research does focus on this intersection of law policy ethics and health. I'm really interested in innovation in a past life I was a patent attorney. And so, when I came to Baylor I did become aware of independent research communities and the, the work that's being done in these spaces became very interested in that work and so started investigating questions around ownership. During the conversations I was having about ownership questions, the broader more general questions around ethics and the role of ethics oversight in the communities kept coming up. So I went back to get a little bit more grant funding to drill down into those issues in particular. And it seemed like the appropriate way to do so was through an interview study by the committee and getting the perspectives of the individuals doing the work, whose work would be subjected to ethics oversight. Yeah, and I was so pleased and honored to be asked to join your research team, as someone who had been reporting on and writing about these communities for so long. So, one of the things we heard in our interviews, which definitely was something that I had encountered before was a lot of different terms for self identification. So we ultimately go with this umbrella term in the paper that's biomedical citizen scientists, but we also heard folks self identify as bio hackers DIY biologists citizen scientists community scientists, independent scientists. And so, you know, we definitely had a diverse cross section a lot of these different sort of subgroups of independent communities. But we also did a really deep dive into sort of who exactly were we interviewing and and who were our study participants. So we have a slide. Sure. And I'm going to share my screen. Yeah, so I Alex thanks for any that I think that captures well that we were trying to elicit sort of broad perspectives that were sort of representative of various communities multiple communities and activities. We ended up we did these interviews at two different conferences. The first was bio hack the planet and the second was the global community bio summit. We spoke to 35 individuals and the this table which I've broken down on the right is reported in our larger paper, reporting our findings which is published open access in citizen science theory and practice. Our interviewees well 60% did identify as male. The majority were between ages 30 and 50. They came from six different countries, but the majority were based in the United States, and specifically in the United States in the Northeast, as well as the West Coast really California. And then finally our interviewees were pretty, pretty evenly split between the two conferences that they attended. Yeah, and we also, you know, we're, we're really interested in not only the practice of interviewing that's one of my favorite things to do. And also, you know, we get all of this interview data from these amazing folks who take the time to sit down with us. And then what do we do with it right so we had this really wonderful qualitative research methodology that I thought was super interesting and very different from how journalists generally do research, even though a lot of times we get to the same place. So, you know, without an entire research team which is about five or so people at the beginning of the pandemic, we went through a series of steps to sort of get to the heart of the data and the interviews so what is it that we did Christie, what was our qualitative research methods. I'm sure happy to summarize those steps. And some of you listening and maybe familiar with these steps, but we really followed a pretty standard approach. So first we did have the audio recordings professionally transcribed, we then clean the transcripts. And by that, I mean that we took the transcripts back to the audio to make sure that all of the words on the page were faithful to the recording, because every, every word is a data point right at that point we then turn to what's called coding, which is the activity that links data collection to data interpretation. So with coding, we take the transcripts and we apply we identify and apply codes to different chunks of the transcripts. It's really a way to identify patterns across the conversations, because oftentimes interviewees will talk for a long time I mean the conversation can be your way from the question where it began right so we need a way to sort of understand and organize those conversations. So, in a very long and iterative process we don't develop a code book as a team we come together we identify codes we develop a preliminary code book, we take it back to the transcripts. We see if it works usually doesn't it didn't in this case, we went back to the code book we adjusted it etc until we had a final stable code book. At that point, we all went back to the transcripts and we coded all of the transcripts according to that final code book. We then generated coding reports and then sat down with the coding reports in order to do the interpretation work and identify themes that we knew we wanted to report in our final publication. I'm going to wrap up and I'm going to talk a little bit about what those things actually were. And here I will share my screen. We did, we did find 10 sort of high level ethical priorities. And folks noted as things that were important to them that they were thinking about, and that they felt, you know, was really a part of conversations that were happening in the community and so those 10 that we sort of picked out of our of our data as the priorities of folks in communities were autonomy, respect, diversity, safety, community consent, quality, education, altruism and good science. And it seems, you know, kind of silly to say because these are all pretty high level ethics concepts and principles that are necessary for good studies. But they don't actually map exactly on to the traditional sort of establishment ethical principles that, you know, more traditional and establishment ethical oversight models sort of use as guiding principles and so that was a little bit interesting. But also, it's really important to note that these conversations are already happening. When we went to talk to folks about what their attitudes were about ethics. It wasn't the first time that these conversations had come up and that it was it was very clear that a lot of thought is going on in the community and a lot of conversations center around these concepts of ethical oversight and how do we do good science well and do it right. So that's one of the things that we definitely saw. And I also wanted to talk a little bit about, you know, the fact that there's already this culture of ethics that exists in in these, in these spaces. But there's not exactly a sort of centralized way that folks are using to actually put their principles into practice, right. And so, one of the things that we talk about in our paper are a few different models for ethical oversight that exists and that we have sort of seen examples of or know that folks may be interested in. And I'm happy to share the conversations around those oversight models I'm going to share my screen. And I am watching the clock so I'll try and do this in just a couple of minutes. So as is probably everybody here knows the traditional mechanism for ethics oversight in the United States is called the institutional review board. It is required for all federally funded research as well as FDA regulated activities. So what we were interested in is what our interviewees perspectives are on the feasibility and appropriateness of that model as well as some alternatives to it. Given that IRBs may not be accessible to independent research communities either because they're not affiliated with institutions or they can't afford the fees that are charged by independent IRBs. So we set them out here this is we call this our stair step figure, where we've organized these models from sort of formal processes to informal processes and external review meaning external to the communities to very internal mechanisms. And with the caveat that we were not able to discuss every mechanism with every interviewee due to time constraints. But if we start over on the left, we did discuss traditional IRB review as well as some sort of experimentation that's that's taking place with IRB review in some communities so some communities are registering their own IRBs. We discussed expert consultation models, this is where outside experts by that I mean professional ethicists biosafety experts other scientific experts might make themselves available to communities to provide opinions and answer questions. Then there's a community review model, which is really a community built oversight committee that usually that the idea is that they usually provide guidance to specific projects. Then there's this idea of crowdsource review, which is a really interesting model that's been proposed in the literature and the idea is that an individual or individuals designated as citizen ethicists would provide their opinions on those projects. There's the idea of systematized self reflection. This is a model that was used quite successfully by a group of quantified selfers and the idea is that project participants get together periodically and they reflect on the ethical issues that they're confronting in their work. And then finally all the way to the right are codes of ethics which of course have been adopted in community bio and DIY bio communities. So we, again, we sought to understand perspectives around feasibility and appropriateness with these models. Yeah, and I think there was a wide range of opinions about and attitudes about each one of these and like you said we didn't get a chance to bring up each one to every person, but we did ask a lot of people about a lot of different kinds of oversight models. So there's definitely, you know, the biggest split that I saw was the difference in opinion about bringing on experts and even consulting with outside experts like, you know, folks who are legal experts are regularly knowledgeable about regulatory systems or bioethics or bio safety experts who are part of sort of establishment systems. There was a large group of folks that we interviewed who are more hesitant about that but then there are also those who are really really open to that idea, and are willing that are willing to engage in building bridges building relationships and having open conversations with folks in establishment spaces that I really am excited about so. I am to a big takeaway for me is it needs to be the right partner, it needs to be a partner who is willing to invest time into understanding the activities and the priorities of the community that is asking them for help. I thought it was very encouraging as well. Yeah. So what, what are some of the barriers to getting to these models that you see. Yeah, so what we heard is I mean as you said I mean lots of interest in trying out these different kinds of models, but significant barriers in doing so. And honestly it seems to come down to time and money, especially if you look at sort of community review models that that really will take an investment to you to establish, as well as to sustain. So, I think to me that's that's the next big question is how we can support communities in it, you know, piloting these models and helping them overcome those barriers. What are your thoughts though. Well absolutely I mean I think that you know our role is just to sort of listen and sort of help if we're asked, but that ultimately you know one of the other things that we heard sort of across the board really was that any kind of ethics oversight model needs to be culture built from inside the community and it needs to be driven by members of these communities, and not from people who are outside. And so that's, that's basically what we were, you know, trying to do with this paper was just sort of listen, and just sort of keep pushing this conversation along of, you know that that had already been happening and will continue to you know we're just really excited to to you know help continue to help and be there for for any advice or insight or whatever or more just more conversations at conferences because that's fun too. Yeah, I think we're probably at the end of time, but we also wanted to note that we built a website called outlaw bio.org and all of our research and a lot of Christie's research and other members of our research team that is related can all be found on that website. And so we're really excited to sort of share all of this with the community and build it out. Yeah, so thank you for the opportunity to share their project. It was great talking with you. Christie and thanks everyone at DEF CON for listening and thank you especially to Nina and the other bio hacker village organizers for having us and yeah hopefully we will see you next year in person, one can only hope. Thank you so much everyone.