Jay Benforado, US EPA
We live in a networked world where people, technology and information come together in ways previously unimaginable. Many organizations now engage in and support citizen science and crowdsourcing, resulting in creative collaborations across our society that link science with people. The excitement and possibility of citizen science has reached the Federal government; last year, President Obama’s science advisor issued a policy directive that encourages all Federal agencies (and other organizations) to use citizen science and crowdsourcing to “engage the American public in addressing societal needs and accelerating science, technology, and innovation.” A new website – citizenscience.gov – contains a toolkit for designing projects. Citizen science project are created with different goals, from enhancing scientific research, to addressing societal needs and providing hands-on learning in science, technology, engineering and mathematics (STEM). Although there are exciting success stories of community citizen science, more attention is needed on how to support place-based, community-driven projects. One key to success will be to define and demonstrate new types of partnerships that draw from all parts of our society.
Symma Finn, NIEHS
The National Institute of Environmental Health Sciences (NIEHS) has long recognized the importance of community engagement for designing, conducting, implementing and sustaining environmental health sciences research. With the growing conversation about the value of citizen scientists in federal programs, social scientists working at the NIEHS have more recently considered the concept of citizen science, how it relates to more traditional definitions of community engaged research, and how citizen science may be a very relevant modality for answering community concerns about local and regional exposures and for addressing social, health and environmental disparities. This talk will highlight the history of NIEHS commitment to the full spectrum of community engaged research and citizen science efforts, as well as distinguish the unique motivations underlying these two different, yet complementary, ways of answering scientific questions and community concerns.
Omega Wilson, West End Revitalization Association (WERA) and Sacoby Wilson, University of Maryland-College Park
Community-Owned and Managed Research (COMR)‘s key principles include “funding equity,” “management parity,” and “science for compliance” for community-based organizations (CBOs) when partnering with university and other federally-funded researchers. Unlike university-managed research models, COMR places community members in the role of principal investigator, requiring that CBOs be funded directly, manage the research process, and retain ownership of scientific data. With support from environmental justice grants (2000-2001) and (2004-2007) from the US EPA, WERA developed a collaborative problem-solving (CPS) model to demonstrate its COMR approach. WERA facilitated the collection of scientific data needed to encourage legal compliance and the enforcement of public health and civil rights statutes by local, state, and federal agencies. A vast difference between COMR is that community-based participatory research (CBPR) type models do not emphasize use of data collected to leverage legal actions to address violations of public health or civil rights statutes. As part of the WERA and EPA efforts to address the denial of basic amenities (safe drinking water and sewer connections) in the three African and Native American communities in Mebane, NC, a partnership was formed with students and faculty at the UNC Chapel Hill’s School of Public Health to collect and analyze drinking water and community stream water samples.
Linda S. Birnbaum, NIEHS and National Toxicology Program
The National Institute of Environmental Health Sciences (NIEHS) has a history of supporting Citizen Science and Community-Engaged Research that reaches back many decades. As the NIEHS celebrates its 50th anniversary, its Director provides a brief retrospective of the Institute’s role in the evolution of these approaches and their application to environmental health problems, a demonstration of how the Institute has prioritized and integrated Citizen Science and Community-Engaged Research across a range of its programs, and a look at some of the emerging areas of science being supported by the Institute that will provide new methods, tools, and information for use by traditional scientists and citizen scientists alike, and in collaboration, to improve the health of people and communities around the nation and around the world.
Caren Cooper, NC State/NC Museum of Natural Sciences
Citizen science includes both community-based and crowd-based methods of public engagement in research. Community-based approaches tend to be motivated in response to local concerns in a regulatory context, while crowd-based approaches tend to be anticipatory in a peer-science context and occur over large geographic and temporal scales. Crowd-based styles of citizen science have pushed mainstream science to accept participatory approaches as valid paths to scientific discover in many disciplines. Methods for protocols, handling data quality, managing participants, and other aspects of project design for crowd-based citizen science have spread as disciplines have exchanged best practices. Some methods have not crossed barriers between community-based and crowd-based practices. For example, crowd-based efforts could benefit from the responsive aspects and deeper engagement common to community-based styles of citizen science, and community-based styles might benefit by broadening methods to include crowdsourcing. There is a need for exploration of a paradigm in which methods of crowd-based citizen science could be relevant to environmental health in a regulatory context.
Chip Hughes, NIEHS
NIEHS has had a long history of developing research responses during environmental disaster and emerging threat situations. Over time, it has become clearer of the essential need to ensure community engagement as a key part of the need for data collection and research during disaster responses. As part of this effort, NIEHS has played a unique role in stimulating citizen science partnerships between Federal, academic, public health, and local communities to identify research needs (e.g., Gulf Spill Consortia), utilize local knowledge for designing research, and working together to collect (Red Cross, GIS, ground truthing, personal monitors, etc.), analyze, and communicate information, research data, and results. The NIEHS Worker Training Program has also served as an important bridge between environmental justice communities, emergency responders and academic researchers in promoting data sharing and integration with emergency incident commanders.
Amanda Kaufman, US EPA
Recent availability of new, lower cost (less than $2,500) environmental monitors has increased the popularity of citizen environmental data collection, allowing community members to collect and analyze data and interpret results often as part of collaborative projects with professional scientists. Many of these projects solve complex real-world problems, identify research questions, make new discoveries, and conribute to development of new technologies and applications. However, citizen scientists and professional scientists alike face a high technical hurdle in projects involving air quality monitoring. EPA created the “Air Sensor Toolbox for Citizen Scientists” to help citizens collect, analyze, interpret, and communicate air quality data effectively. The Toolbox is an online resource for information and guidance on new, low-cost, compact technologies used for measuring air quality. The utility of the Toolbox resources was tested collaboratively by EPA’s Office of Research and Development, EPA Region 2, and community action groups in Newark, New Jersey and Ponce, Puerto Rico. Lessons learned from these projects will be discussed in this presentation.
Kim Anderson, Oregon State
The interest and role of communities and citizens with passive sampler approaches including personal wristbands and stationary technology will be shared. Many communities are concerned about chemicals in their environments in general including their personal environment. Environmental justice communities have identified a lack of local and neighborhood specific chemical information for communities surrounded by agriculture and/or industry or from chemical disasters. Embracing participatory sampling platforms and open data sharing provides a decisive and convincing role for individuals and communities. Available low-cost sampling platforms with intuitive data visualization allows for informed communities and individuals to build their vision of response which may contribute to their health, well-being and resilience. We have developed common wristbands coupled with smart phones and spirometers to serve as a sampling platform that quantitatively integrate chemical exposure from a person’s immediate environment with lung function and location. Specific feedback from communities and individuals in Africa, Peru and North America on recruiting when wristbands are used along with compliance, comfort, fashion and feedback about chemicals of interest will be shared, including chemical findings.
Gretchen Gehrke, Public Laboratory for Open Technology & Science
Community science with low-cost technology has several grand opportunities and known challenges to its utility. In order to address challenges and maximize the potential of low-cost technology in community science, other factors such as study design and data interpretation support are essential. Recognizing inherent limitations in low-cost technologies, opportunities abound by expanding the scope and scale of research, highlighting areas where standard data collection is insufficient for community needs, and integrating with standard practices to conduct efficient and relevant studies in support of community objectives. This brief talk will discuss how we can best utilize low-cost technologies and the opportunities they present.
Damian Shea, NC State
Over one billion people in the world live under impoverished conditions without access to safe drinking water and with potentially harmful exposure to chemicals through indoor heating/cooking, pesticide use/ingestion, proximity to hazardous wastes, and other sources. Despite advances in sensor/exposure measurement technology that have decreased the cost of chemical exposure monitoring, access to accurate chemical exposure measurements will remain impossible for huge populations in the foreseeable future. And even if chemical exposure can be adequately assessed, opportunities to reduce harmful exposure are often limited by cultural and financial barriers. We will share preliminary results of our study investigating how well measured chemical exposures are predicted by 1) regional scale land, water and chemical use patterns and 2) personal chemical exposure diaries. Actual chemical exposures were measured in 1) diet (food and drinking water), 2) air (both active and passive sampling), 3) passive wearable dosimeters, and 4) hair and urine. Participants were recruited from rural mountain villages in southwestern China. Our preliminary findings indicate that chemical use patterns and exposure diaries often allowed categorization of exposures into useful approximate exposure classes and aided in modifying behavior to reduce exposure to chemicals. However, successful behavior modification was highly dependent on local cultural and financial barriers.
Ron Williams, US EPA
The recent development of next generation air monitoring technology (NGAM) is providing the opportunity for citizen scientists and other interested parties to engage in non-regulatory air quality monitoring. A wide variety of small, highly portable and low cost monitoring devices are being developed by industry, universities and individuals to potentially improve air quality monitoring capabilities. EPA scientists are involved in a wide variety of research efforts to discover what technologies are available and define their performance capabilities. In addition, low cost air quality sensors are being incorporated into monitoring systems being deployed in pilot study efforts to investigate their effectiveness for citizen science and other applications.
Sally Perreault Darney, Environmental Health Perspectives
Scholarly journals face significant challenges in publishing environmental health information that is scientifically sound, reliable, and unbiased. At the same time, the information must be clear and accessible enough to be used by government officials in making regulatory decisions, by public health officials in developing sound policies, by city planners and community groups in building safe and sustainable communities, and by private citizens in making personal choices. The current focus on community-engaged research and citizen science provides accessibility but also introduces social networking and web-based information that may or may not be adequately reviewed or vetted, and new approaches and tools for collecting and analyzing data that may not yet be fully validated. Furthermore, nonscientists are more likely to obtain information about environmental health from the popular press than from scientific articles and therefore may be exposed to biased or oversimplified reporting. Scholarly journals can rise to these challenges by including content that is written for a less technical audience and made more easily discoverable, and by partnering with organizations that translate scientific knowledge into more readily understandable language and formats which are appropriate to the needs of their stakeholders.
Christine Goforth, NC Museum of Natural Sciences
Most citizen science practitioners recognize the need to collect and use data from their participants in an ethical way, but what do citizen scientists look for when they participate in a project? Based on data gathered informally from the thousands of citizen scientists worked with, conversations with other citizen science project leaders, and an informal survey of citizen scientists about their privacy concerns, it is clear that citizen scientists are heavily divided about which information they wish to protect and that which they are willing to have freely – and publicly – shared. A few trends emerge. Most people do not care about obscuring their identity when they create online citizen science accounts; in fact many people choose to use their real names intentionally. Survey participants indicated that they do look for privacy information before they participate, but a lack of this information does not stop a full third of respondents from participating anyway. In many cases, citizen scientists care less about their personal data being shared than the risk of being inconvenienced, especially if they receive emails they do not want. Finally, in general, citizen scientists care more about the protection of deeply personal data that is collected through health-related citizen science projects than they do less personal data like bird lists or wildlife sightings, with the possible exception of women who regularly visit the same places to collect data alone. I conclude that: a) there is a greater need for education of citizen scientists about potential privacy and other risks of participating in citizen science projects; and b) that the primary burden of ensuring that participants understand the risks of their participation should fall on project leaders until we are more certain that citizen scientists are aware of these issues themselves.
Lea Shanley, UNC Chapel Hill
Millions of individuals who are not professional scientists participate in and contribute to scientific research through a broad spectrum of activities and roles. We propose a typology to classify them into four groups based on their role in science, with each requiring potentially different forms of oversight: human subject research participants, self-subject citizen scientists, citizen scientist recorders, and DIY citizen scientists. We review ethical issues for each type of citizen scientist, describing their role in research, the risks faced from research activities, how and by whom risks have been addressed, and explore options for oversight. Existing ethics review protocols to protect human subject research participants may not be appropriately applied to circumstances of self-subject citizen scientists or citizen scientist recorders, and have not been applied to DIY citizen scientists. By clarifying citizen scientists according to their distinct roles in research, and highlighting the complexity of distinct ethical challenges with each, we urge joint evaluation by professional scientists, all classes of citizen scientists, and other stakeholders to collectively determine the type of oversight that will best mitigate risks without stymying benefits. (This presentation will be based on a paper by Caren Cooper1, Lea Shanley2,Teresa Scassa3, Jeffrey Kahn, and Effy Vayena.)
Environmental Protection Agency
National Institute of Environmental Health Sciences
Nicholas School of the Environment at Duke University
North Carolina State University
UNC Gillings School of Global Public Health
Kenan Institute for Engineering, Technology & Science
Social & Scientific Systems, Inc.
Integrated Laboratory Systems
North Carolina Biotechnology Center