 Thanks everyone. I'm going to apologize right away for both being, I have no slides, for both being late yesterday as well as I'm going to leave right after this. The IOM data sharing report that we worked on for the last year comes out today at one o'clock for the public. I can give you a little preview before I leave as long as Maggie who's in the back room here can date stamp this after one o'clock so that so that I'm not being unethical. So I thought I'd just do a little context setting before we bring up our panelists and I think also we had a conversation in the planning that was okay if I said something in addition to just moderating the panel. So I think when we look at after we want to certainly set that in a context because I think even this sort of and I know that when I talk to the organizers it's an artificial dichotomy or were several different facets in the sense of before or after. There's really in some sense no no such thing but the kind of sort of takeaways from yesterday that I got were that first I think it'd be really important if we became a we in this room and didn't have citizen scientists over there whatever and whoever they are and us NIH or real scientists or whatever language we want to use. I started to hear some othering language that I think is not helpful and some of it was were things and it's really you know and I'm gonna because I'm not gonna other I'm gonna say we are using language like let's let the patients do blah blah blah and when we let people do stuff it means we're in charge and we're paternalistic so I'm gonna ask us to be careful with our language as we go through the rest of this time together. I think also we feel like we're being studied and I'm sure that's for both sets of communities and so if I just put on sort of my citizen science hat I have been studied we've been studied to see have we log jammed research and there have been articles written about me particularly in the 1990s when when I started 20 years ago and my kids were diagnosed with a genetic disease saying that in fact I was stymying research and once in a while I feel that again I don't feel it so much in recent years because there have been formal recognitions of what we've been doing for the last 20 years and others have been doing for the last 50 years so you know PCORI saying there's such a thing as patient-powered research networks that have been actually around 50 years is a recognition that's really good but I think we want to be careful when we say do we want to study those people so even when we say for example so what should NIH and LC do to help those people let's say we'll all do this together and so some of the research even even the LC questions the research LC questions will come from citizen science and from whatever else we want to call this area I want to ask NIH what does it mean to do business in this new area so if we take this the LC system that's been around since Congress said there has to be whatever it was 6% of the NHGRI budget and then more of each of the institutes have been more and more involved NCI etc what does it mean though for NIH to not apply the same principles they apply to all the formal traditional research systems to this area I think it means something different and I think that nuance needs to be teased out and I think we've been touching on it we've heard some good stuff Sandra had some really great stuff some of the stuff that was just summarized was really was really good I think we also want to say let's not retreat to a former kind of misperception about LC so I remember three times ago planning for the NHGRI strategic plan so that's something like 15 years ago or I'm sure some of you can remember this we were in Aralee Virginia in the retreat center and someone stood up in fact I can remember who was and said LC just squeezes the pipeline and prevents things from happening remember those those days so let's let's stay away from LC squeezing the pipeline perception now most of us would say LC never squeezed the pipeline that was a perception but we all know perception is reality so let's not be afraid let's not be putting on the brakes because we're afraid let's figure out how do we enable the good things that are coming and and so then I would ask LC what can enable the passion the fire this is a good thing that's happening we're actually starting to see the public get involved in this science the way they always were in astronomy and ornithology and entomology nobody ever thinks of a thing of the Audubon bird counting that happens once a year everybody's happy that all those armies go out to sanctuaries and other places and count the birds well let's have us start to count the ways we can further a biomedical research then I'd ask what are the new economies or what other advances can be formed because I think when things start economies get built around it's called a network effect what is the network effect around this if we enable this and how will this actually accelerate the goals we have even in the traditional biomedical research world and then I'd further that and say and let's look at the rest of the world and how it's advanced you know there were lots and lots of issues when the banks said no no you have to use my plastic card not your plastic card and our cards will never talk to each other in a financial system where there's so much scariness around that data that got overwhelmed pretty fast when consumers said I don't want a card for this bank and a card for that bank and I want to go to the grocery store with the same card so let's figure out what are we going to do in this space that will enable be enabled by the things that other industries have already learned then I think just a second on my own transition so I mean some now would call me a traditional scientist I have 140 peer-reviewed papers and PubMed some would say I don't belong here of a master's in religious studies and never took a science course in my entire life I've run 30 clinical trials in pseudosanthoma elastocone I've I've managed more than 30 million dollars in federal grants from the major federal agencies so lots of kind of mixed upness in what I've done all the way back to you know was it ethical when our kids would open the freezer 20 years ago and say mom why does it say ovaries next to the ice cream well somebody with PXC had their ovaries removed and they sent them to us and so was that ethical for us to have their ovaries in our freezer no was it a good way to start yes for me it was a really fine way to start did I then call Elizabeth Thompson at NHGRI and say what do I do about doing this in a way that's reasonable and would be more ethical and she helped me set up our first blood and tissue bank in 1995 so there I think there we're going to see the same kinds of transitions from the garages with PCR machines to this world and there's no reason to keep thinking of them as separate from one another there have been times throughout those years and in fact one horrendously sad time when I got all the way to the point of a clinical trial happening here at the clinical center at NIH and when we got to the point of signing the papers for me to bring in the cash and the people they said to me and you can attend the meetings if you'll sit in the back and just carry the briefcase of the of the real researchers that was maybe 10 years ago so not so long ago and I don't want to see us reverting to that kind of world again at all because that is devastating both to the people who have passion to do these things but also to the community overall so I think we also want to make sure that during this time we're especially the rest today and I heard the Kelly give this admonition yesterday let's stay with the theme that NIH needs us to help them understand what we're going to do in the LC area this high-tech Venn diagram is fabulous because I think it'll keep us focused today and how do we want to see things that have contributed so for example traditional advocacy which I am also a traditional advocate and I think we should be going away and a new world should come by the way but and that's a whole separate thing but I think that has something to say to the world of citizen science but it is not the citizen science that we've been talking about here in the definition that we see at the top of the paper and I think traditional advocacy might be only helpful to a certain point because at another point it's very concerned about sustaining an organization an industry around a particular disease because of a dying child because of the passion of a family and that's all wonderful and great but it isn't what in general is happening in citizen science so now shifting to the panel and just some thoughts to kick us off in the after math of research what you know what are we supposed to be doing and I think citizen science and citizens or the public or the civic engagement has some of the same LC issues of other kinds of research after the research is done and in fact the data sharing report that I'll share with you later is is named some of those things and so certain things like data sharing lay summaries what are the learnings that should be put back into the system and what are the negative results I probably a citizen science types are generating way more negative results than positive results and all that needs to be fed back into the system what about diversity and inclusion I'm not sure yet because so much of this is happening in sort of the early adopters those self-quantified self-folks the Silicon Valley folks that we're reaching all the communities that need to be reached and empowered what about openness to IP we still see some of the same struggles we see elsewhere and then there I think there's some different issues understanding what does it mean to exploit these new technologies networks viral nature of things online activity mobile activity texting activity for the good and what are the what are the ethical issues in there that we never considered in LC because that wasn't an integral part of doing science how do we go beyond traditional motivations for me this is a huge one incentives are very much aligned in science for tenure publications you know what what questions do we need to ask the traditional system and the citizen science system about those kinds of things and the tensions for what is the motivation is it to be cool is it because I have a new gadget and my technology focused you know that kind of stuff I think we want to ask how do we capture and create good systems that will enable other people to do the next thing without becoming an institution every new instance I mean when NIH was born it was cool and new right and now it's sort of well we got to figure out how to move beyond these kind of state structures we're going to do the same thing again we do that as people so how do we get out of that and then how do we quickly formalize the good and chuck the bad in a kind of lean startup mode so I think we're going to hear I'm really excited about this panel I've only just met all of you today really today and on the phone and I think we're going to hear some really super things because I think we're going to have a lot of diversity in the people who will present so let's start with Julia Brody from the Silent Spring Institute