 Okay, so I wanted to thank Dave and Charlize for inviting me here. I'm really excited to be talking about some of these issues and I'm really looking forward to sharing and learning over the next couple of days. What I've been tasked with is really to just start the conversation around some of the LC issues that may be emerging from this space. And I'm not gonna go into a lot of detail since there's such a wealth of experience in the room and I think we'll be diving deep into some of the issues as the days progress. So I'm just gonna give you kind of a teaser if you will of some of the issues that might arise. And I thought I would do it by focusing on the people, the humans that are participating in these projects, some of their motivations and also some of the dimensions of these projects that may be invoking some of the ethical issues that we might wanna focus in on just by way of introduction. So I'm Sandra Lee, I'm a medical anthropologist at the Stanford Center for Biomedical Ethics. I've been working on a project looking at personal genetic testing over the last several years at 23andMe, specifically interested in issues around social networking and how the genome can act as a conduit for different social identities and social formations, but also interested in their research efforts in terms of recruiting folks into their biobank and seeing the types of collaborations that have emerged from that. So what I thought I would start with is, and I'm drawing upon a number of folks's work which now send you the references afterwards, but to start with why people are participating in these type of projects. And the work of Bonnie et al actually resonates with some of the things that I've seen at 23andMe, just in terms of the different kinds of things like egoism, collectivism, altruism and principalism. And I thought I'd just walk through some of this as a way of thinking about the different stakeholders. So egoism, you have the perspective of the scientists, the data volunteers provide and enhance my research. You have the volunteers who wanna collaborate with scientists because it enables them to open their horizons to new ideas and knowledge. And so there's this idea that engaging in these projects can provide something that each stakeholder wants from that endeavor. Collectivism, this idea of collaboration with volunteers will be helpful for my scientific community, for the volunteers, these collaborations between scientists and volunteers will be beneficial for the volunteers, perhaps also as a community. Altruism, the collaboration with volunteers helps educate them about scientific methods. I'm going to help with science education through these various projects. Collaboration for the volunteers, collaboration between scientists and scientific volunteers are beneficial for scientists. I'm doing this because I want to further science. And then principalism, this idea that collaboration with volunteers is worthwhile because I believe that all scientific knowledge should be accessible to everyone regardless of their expertise. From the perspective of the volunteers, there is this attitude that similarly, that there needs to be increased accessibility by the public to scientific knowledge. So this is not new, obviously, but it helps us think about what might be the motivations and the desires, the hopes of the various stakeholders who are involved in these citizen science projects. There's been some work, and we heard a little bit from Pietro in terms of how these relationships that are structured in various projects, Dana Rotman and her group have thought about it in these three ways. I think there are probably other ways as well. But if we think about these citizen science projects as being contributory projects, what does that mean with regard to the relationship between researchers and the public? Here, the way she's defined it, the public are recruited into projects that are already conceived and designed by scientists. So perhaps science per usual, but the idea that they are brought into these projects, collaborative projects, scientists work with the public to collaborate on research design in addition to enabling the public to contribute data. So there might be some collaboration on actually coming up with the design together. And then these co-created projects. So scientists and the public are involved in each phase of research beginning from the conception all the way through to co-publication. So this is one way of thinking about it, but I think it's helpful to start to, as we move into these various citizen science projects to think about what are our taxonomies with regard to those relationships and then how do those relationships then create expectations around reciprocity and benefit sharing and also responsibility with regard to expertise. It helps us to try to structure what is happening for these various categories. So what I thought I would do now is just to go through some dimensions of these projects and to think about what are the kinds of questions that might emerge. This is not to be exhaustive, but it's just to give us a sense of what are the kinds of qualities that we can pick up from these different citizen science projects and how does the public think about what they're getting out of it. And I'm relying on the work of Christopher Kelty and Aaron Panofsky who are fellow social scientists who looked at participant-based research and came up with these different seven dimensions. And I thought that would be useful to help us to go through some of these. So the first is this idea of an educative dividend or the idea of self-discovery. So participants eager to join a project where they can learn something new about themselves or learn a new skill. And here I wire Sebastian Sungs project, which Pietro mentioned as an example of this where they're able to play a game but they're also able to learn a bit about the brain and neuronal mapping. And it begs the question, who is able to participate? What level of expertise? I mean, presumably this is open to the general public. We might wanna ask what part of the public is actually being taken up into these projects? What are the expectations around expertise? Who curates the data? What is the nature of quality control? How are standards created? Are these created by the participants? Or are these simply research-defined standards? And then how are these monitored? What are the limits for repurposing and mining shared data in the name of discovery? So and this speaks more to the, let's say the efforts of 23andMe where data is collected and then perhaps mined due participants who agree to have their data contributed for the broad purpose of health research. Then also are they agreeing to have that data mined in very different ways in the name of discovery? Another dimension of these various projects are the goals and tasks where participants not only undertake tasks but help set the goals. And here I think this is an exemplar of our PSE International in terms of defining what those goals might be by the participants. Questions about how are goals determined in various projects? Who sets the agenda? Who participates in research design? Who determines what the results mean? How are results published? And what constitutes acknowledgement and responsibility? So how far do projects then take this idea of participants being kind of co-creators of the research and what types of structures might need to be in place in terms of executing on those goals? Another dimension is this idea of research control. So participants get to control or use the resources not merely produce them. This is Makuto, an online digital archive if you will where cultural heritage products and resources may be deposited and shared with individuals. But the idea here is that there are working rules around who gets access to these resources, how they should be used. And so it begs the question when you enter into projects where there are pooled resources are institutional interests always apparent in terms of these various projects? How does the ethos of open sharing impact a desire for control? How do participants try to manage this? How do researchers negotiate this with their participants? How is data protected and secured? What rights do third party platforms have to resources? Then there's the exit. So this dimension of wanting the ability to leave without penalty and with the resources that they've accumulated from their participation in the past. So is exiting even possible for citizen science projects and biomedical research? What assurance can be made that one has actually exited? How do you know that you've left the party if you will? How do exit without some loss of data access to network and other resources? Should there, is it all or nothing? Should people who have participated in various projects be offered something for their participation? Some access or is it simply a full-on exit if that is even technically possible? Voice, so this dimension of having voice in these various projects, the opportunity to speak back in order to influence the use of data. Participants want to have voice. What are the rules of engagement? What are effective models for speaking back? What is the obligation to hear those voices who perhaps want to change a particular research agenda or the rules of engagement? Whose voices are actually being heard in these projects? We think about the public being taken up in these citizen science projects. Is there a research to suggest that maybe it's a very select part of the public? I would venture to say, judging from at least direct to consumer genetics, it is a very particular slice of the public. What does that mean in terms of the diversity and representativeness of participants? And if we are going to include these in biomedical research, how do we be mindful of those kinds of characteristics in terms of voice? Another dimension that has become seemingly popular is this idea of gaming and having visible metrics. So participants are really interested to see how they're progressing in whatever project they're involved with. So these empirical demonstrations of connection between participants and outcomes. And I guess the question here that Pietro actually brought up is this idea of compensation for participation. So it's entertainment and kind of the desire to participate in a game. Is that compensation enough? Are there issues with blurring work and play? Not calling it play and not work when it's actually valuable labor to researchers? What happens with that blurring of language in which a citizen science project might be characterized to would be participants? Should we care whether it is a corporate entity or a nonprofit sponsoring these games? How do we think through some of these issues about profit? And then finally, this dimension, effective visible communicative capacity is how Kelty and Panofsky have characterized it. But this is the desire for participants to have opportunities to produce affect affiliation sociability. And this really resonates with the work that I've been doing with 23andMe in terms of the desire for participants to be connected to other individuals makes their activities more meaningful. And so the kinds of questions that we were asking is what are the expectations and the flow of information when you think that you are part of an insular community and you are more free and trusting to share information? How does the participant understand how the flow of information will occur? What should participants know about the limits of privacy and data security? Should there be oversight of dissemination of expertise and self-research activity? So thinking about what these social platforms create in terms of different questions around LC. And then I'll just end with this. One of the goals for myself in coming to this workshop is really trying to figure out, so what's new here? We've referred to these type of activities in different ways and I think it does make a difference if we're calling the citizen science versus community-based participatory research or hacking, biohacking. So I think that thinking about how we want to think about this in terms of is this really democratization where you're creating new ways in which the public can actually have a say or have a role in science or is this science per usual just broader in terms of recruitment and labor? Is it bottom-up disruption? Is that where the governance models are really gonna be coming from or is this really another mode of institutionalization? How do we know the difference with these various projects? Is open sharing and transparency occurring or is this kind of situation on the sense that we have this constant evolving in terms of the rules for engagement and how do participants react to that type of landscape? Is this empowerment or is this a lot of data without real information? So these are just to be provocative in thinking about what is citizen science? Is it really different? What are the kinds of social processes that it puts in place that we haven't seen yet and if they are truly new, what are the new ethical issues that we should be thinking about? And I'll just end there and I think Kelly's gonna help us with discussion of some of these issues and here are just some of the references that I've used in this talk. Thank you. You've heard a lot from the previous two speakers and I think from your morning conversation. So, and I am especially motivated to have us break on time because the coffee is upstairs, it's not in this room. So we have 10 minutes to kind of do an initial synthesis and gelling on what you've just heard and we know that this is just gonna be a start. So what I wanna invite you to do is take, literally take two minutes and just for yourself, you just heard a lot. What are the new, are there new LC issues here that citizen science poses to us? Are there some old ones that are, we don't wanna throw out that are really important for us to keep on the table as we're working in this newer space? So take two minutes and for the, there's a really nice active Twitter feed going right now for those that are watching remotely, I would love to see your LC questions, tag your LC issues as you're thinking about them just showing up on the Twitter feed and I'll try to try to read those out as we head into summary here.