 Thank you. I'm really excited to be here and to meet Sharon and all of you and to have environmental health included in this Conversation, so it's really really great to be here. I am going to start at the beginning not the end in 1993 the state of Massachusetts for the first time released cancer incidence rates by town and leaders in the Massachusetts breast cancer coalition Notice that nearly all the towns on Cape Cod had higher incidence than the statewide rate and Thousands of women gathered in Boston to ask the state to find out why The women were shocked that that why question wasn't really that much part of the cancer research agenda and that environmental factors in particular had not been investigated and They decided that they needed a lab of their own to pursue this question of environmental factors and prevention and they hired their own science team and Raised a million dollars a year for about eight years from the state to Begin this inquiry So we're we're a citizen owned science team and you can kind of put that in your definitional sphere where wherever it fits for you The activists remain in governance roles at the Institute. We celebrated our 20th anniversary this year so motivated by questions about environment and breast cancer we study endocrine disrupting compounds and chemicals that are that cause mammary gland tumors in animal studies, so these are Common consumer product chemicals plastic in their and plastics detergents cosmetics and they're an air and water pollution so the Cape Cod study began with a three-year scoping process that involved community mapping Lots of community meetings to identify hypotheses and we ended up as part of the case the second phase of the Cape Cod study Testing for 89 endocrine disruptors in household air and dust and urine samples in 120 homes For 30 of these chemicals This was the first time they have been tested in the US indoors Then to really understand whether Cape Cod was different in a way that might explain breast cancer incidents We needed to go someplace else very different And we move next to Richmond, California. It's in the Bay Area You can see the homes are in that yellow circle there next to a Chevron oil refinery a marine port and between rail and highway routes And at the request of the community advisory committee there we oh, I forgot to I wanted to show you like this This was not a good neighbor situation The the Chevron caught fire during our study and it blew up shortly after At the request of the community We also included a northern California comparison up the coast in Bolinas And this research I think it's important to note was facilitated by an NIEHS environmental justice grant Which really illustrates some of the characteristics of How NIH can support citizen science? The program officer Shobha Srinivasan Encourage Silent Spring to be the principal investigator We would never have a we never would have applied or succeeded without her support And that was transformative Both for me personally and for Silent Spring as an organization this funding program was focused on capacity building and communication and it didn't require preliminary data. It didn't even require a formal hypothesis and That also was crucial to the success of the project because it meant we could be very responsive to community needs and we ended up adding 20 analytes That were of interest to try to fingerprint the refinery And I know there was discussion yesterday about quality and and ethics requiring quality So I want to just brag a little bit. This project has produced 14 peer-reviewed articles six additional grants going to all the different partners two K awards among the young researchers on the team And scientific discoveries that led to three public health policy changes One just went into effect the California revision of the California flammability standard So you can now buy a couch at Ikea without flame retardants in it A court decision that required cumulative impact assessment for expansion of the reef before they could expand the refinery and EPA health risk assessments for consumer products. So this has been Probably the most productive grant I've ever managed So we did end up in some LC zones throughout it of course, but particularly at the end and I want to talk about Reporting results to participants in communities and the question of sharing data online So very shortly after we finished collecting all the samples on Cape Cod our Cape Cod Coordinators started getting phone calls and getting cornered in the grocery store and Cheryl When are we getting our results? so in the context of a Science activist partnership We knew that we were going to have to work that out and That began a long process of developing methods and then studying them to see what worked. So we've now interviewed participants researchers and IRB members in eight studies and held a workshop for 44 stakeholders on it and Developed some consensus across this group, although it's very much an evolving field about What how and what to report to people when the health effects are uncertain? There are some parallels to genetics, but it's important to remember that for environmental chemicals There are opportunities to take action to reduce exposure So I'm going to skip ahead and just say It can be done. Well We've written a handbook and a peer-reviewed article about this the results of this Review of eight different studies. I have a couple copies. I'd be glad to give to people. It's also online In addition to the experiences of the participants Which I skipped over I think from an ELSI perspective. It's it's also interesting to think about the experience as the researchers They it ended up that focusing on individual results and knowing you had to tell someone their own results Does result in different kind of scientific discovery? We published two papers that resulted from this There's a great temptation to reassure. So you have to be careful to keep honest. It's not easy There's a challenge for researchers to address policy level change So when you find something in so for example flame retardants, you can't really not use couches So that requires a different kind of communication of what you can do When you're reporting results about these kinds of chemicals Researchers of course do encounter problems with resources with timing of when to report We're developing digital methods now that will make it more practical to create personalized reports in large studies And trying to develop methods that tap the universal cognitive capacities and rely less on What people might learn in school? We wanted to place our data in EPA's expo cast database EPA wanted it But we became concerned that we didn't really know whether the environmental data itself Could lead to re-identification. So we're working now both doing an empirical experiment to see how re-identifiable our data are and an inquiry in collaboration with the personal genome project and the Avon army of women To find out what people think about their privacy and and what Do they understand what the privacy risks are and what is their willingness to give up certain kinds of privacy? So I know I'm out of time, but I want to just say like at the top of my list or justice issues And one thing that I think is important at the end of this study is building infrastructure So that the data can be used You can't really just put it on the web and especially if it's citizen posted you need a curator To make sure that it it's Analyzable by people who don't have huge resources of their own to make it accessible IRB issues have come up again and again I also want to mention that that I think we have some things to talk about about the role of those in the university in being part of translating the results to to public policy for environmental health and Hope you'll come. I have a lot of partners in this. It's a lot of IRBs And I thank them all and hope you'll come visit us sometime on the internet or in Boston