 Hi, I'm Mildred Cho. Thank you for inviting me to this and so this is the second session called Building the Relationships, Citizen and Community Engagement in the Development of Research Project. So and I think that we will in this panel will be able to give you some examples of some of these different kinds of relationships and I know that our panelists will be talking from first-hand experience about sort of their the pros and cons of these, the challenges and the opportunities and so I'm just going to say a few brief words of introduction and also just let you know that we're going to go in an order that's a little bit different from the order that's in the program. I'll tell you about that right before we get started but just as by way of introduction to this panel I just wanted to focus on the issue that we are talking about which is building the relationship which is a lot of times where these kinds of activities start. If you think about sort of how science has evolved over the last centuries it's changed a lot maybe in some ways science was initially all citizen science. It used to all be sort of citizens maybe only men probably rich men who were self-funded but okay citizens. It's only more recently in history that science as we think of it now and have come to know it has become professionalized and institutionalized as Sandra talked about and especially in the realm of biomedical research we have like the National Institutes of Health and it's a big thing but with that professionalization and institutionalization one of the things that I hope we'll be able to talk about in this session is that how I think Pearl mentioned this too that that has come with evolution of self-regulation which is part of the core of what it means to be professionalized for an activity professionalized that sort of assumes that there is a level of self-regulation built into that and external regulation as well as sort of definitions of roles so to be professionalized you have to sort of have set rules about who gets to be in the club and who is not in the club anymore. So we're talking about breaking all these barriers but that means breaking a lot of structures that relate to regulation and ethics so I hopefully be able to talk about that over this session and also power relationships who's in power who's not in power and the regulations such as protection for protection of human subjects are really based on this idea of people being not in power and needing protection from those in power so we're talking about flipping a lot of roles and especially since Citizen Science introduces this idea of self-representation where self-representation was not possible before so we're sort of moving back to the future here and so we need to we what we're doing I think is renegotiating these relationships and as we mentioned the role ambiguities can give rise to ethical issues such as conflation of clinical and research goals like such as the therapeutic misconception conflict of interest both financial and non financial and questions about justice and the legitimacy of representation so we're going to hopefully be addressing some of these issues in this panel I just want to give you an example of sort of something that sort of indicates why we need to have this kind of discussion that guy and that guidance is necessary for negotiating these kinds of relationships and discussion about sort of concrete discussion about what does it mean to have engagement with the public engagement with communities so I'm going to give you a an example from a study that we have been doing of the interagency autism coordinating committee I don't know is there anyone in the room from the ICC who's been on the ICC it's a it's a government committee which is made of both non-federal public members as well as federal members and their goal is to coordinate all the funding activities for research and services for autism in the United States and their committee concludes a member of a person with autism spectrum disorder a parent or guardian of somebody with autism on the autism spectrum and a member of an advocacy organization and they also solicit public comment to this committee and so I we have done a study where we identified two separate examples of the activities of this committee that contrast so for one of these examples in the public comment period between April 2010 and about two and a half years later they tackled this issue which was identified by the public commenters of wandering as a problem for families with someone who's who has autism and in April 2010 in February 2011 the committee had already written a letter to the Department of Health and Human Services with action items in April 2011 they initiated a study with the interactive autism network in October 2011 they already had developed a new ICD-9 code to that was created specifically for wandering in 2012 the issue of wandering was added to the strategic plan for the IACC and in October 2012 a survey was published in the journey journal pediatrics and since then there's been a move to include wandering as an amber alert those things you get on your phone that tells you a kid is lost or been kidnapped or something and so that hasn't been approved yet but that is for for that kind of activity especially the research part of that activity that is a sort of stunningly fast turn of events in about two and a half years to get all that done in contrast we found an example where the issue of vaccine safety was raised in the IACC public comment which you might imagine was very controversial it was raised first in May of 2008 and in 14 subsequent public comment sessions since then in 2008 the IACC voted to conduct studies of vaccines and the relationship to autism in January 2009 the IACC voted against conducting studies on vaccine research then in 2009 the vaccine research was removed from the IACC strategic plan in 2010 vaccine research was reinstated in the strategic plan and in 2011 and 2012 it was removed again so you can see that there's clearly up there there's clearly the rubber is meeting the road and not in a good way there's a lot of skid marks here and we need to figure out how to actually get incorporate this idea of citizens being involved and the public being involved in research especially in these research planning phases and research funding decisions early on and sort of to decide what happens when there's sort of a clash of epistemological you know considerations what counts who the difference ideas about what counts as research what counts as good research what counts as fundable research and what should be a priority and so I'll leave you with that as an example of what I think our panel we're going to figure this all out by 1245 and so we're going to start with Holly PA I hope I said your name sort of right who is with parent project muscular dystrophy then we're going to move to Elizabeth Yampierre with the group uproars then move to Nick Anderson who is now at UC Davis in California and Sally Oaken with patients like me and their bios are in your packet so I'm not going to go into detail so that they can spend the time talking so Holly thanks