Community-based Participatory Science is Changing the Way Research Happens—and What Happens Next

Judy Robinson, , UCS | September 9, 2015, 2:58 pm EDT
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When I started working in environmental health the general rule was “the dose makes the poison.” But then new breakthroughs in endocrine disrupting chemicals turned that theory on its ear, showing how some low-dose effects can be more severe than doses at higher levels.

It also used to be generally understood that people are affected by the same chemical exposure in the same way. Now we know additional conditions, like stress, nutrition and genetic makeup, can make the same dose far more hazardous in different people.

Whereas in the past the public seemed content to hear about scientific progress from lab-coat-clad researchers on private crusades to advance their field, now people want science to improve their lives directly. They want progress faster, and a more democratic, participatory role in deciding what needs to change and which research questions will fuel a movement for those changes.

Community-based NGO Lideres Campesinas picking products for testing in California.

Community-based NGO Lideres Campesinas picking products for testing in California. Photo: Suget Lopez

This is because one thing about science hasn’t changed over time: proof alone changes almost nothing. Scientists who work in isolation (or only with academic peers) to put their data in the public domain counting on others to organize around it are often disappointed. Information plus organizing is the only thing that achieves real change.

In my organization, we want science to matter to communities and the public in a new, more robust way. Instead of a few individuals studying and understanding the world around them, we like scientist-community partnerships that are organized around research and societal change goals that give communities the tools to understand their world and take action to make it better.

Coming Clean is a network of community, state, national and technical organizations focused on environmental health and justice. Often we’ve been at the forefront of community-based participatory science efforts to support healthier environments, less toxic products, and a more just and equitable society: all issues that deeply matter to the non-expert public.

Sampling on McMullan Ranch, near Deaver, WY

Sampling on McMullan Ranch, near Deaver, WY. Photo: Deb Thomas

For instance, with environmental justice advocacy organizations in the lead, residents of low-income, minority communities collected products at neighborhood dollar stores to see what unnecessary and dangerous chemical exposures could occur as a result of product purchases. In laboratory results we found over 80% of the products tested contained toxic chemicals at potentially hazardous levels (as documented in our report; “A Day Late and a Dollar Short”). That information, along with their organizing around it, has since attracted over 146,700 people to support the national Campaign for Healthier Solutions. That’s local science at work.

In another instance, when communities on the front-lines of oil and gas development reported nosebleeds, dizziness, and a host of frighteningly worse health problems that ultimately received virtually no more than a shrug from state and federal officials, Coming Clean worked with local organizations and concerned residents across six states to collect and test air samples near fracking-related sites (often from study participants’ own front porches).

Documented in Coming Clean’s report; “Warning Signs: Toxic Pollution Identified at Oil and Gas Development Sites and in the peer-reviewed journal Environmental Health, 38% of the samples collected by community volunteers contained concentrations of volatile compounds exceeding federal standards for health risks, some at levels thousands of times higher than what federal health and environmental agencies consider to be “safe.” Seven air samples from Wyoming contained hydrogen sulfide at levels between two and 660 times the concentration that is immediately dangerous to human life. Beyond the astonishing numbers, the research helped educate and engage the public on the problem and solutions communities seek, filled critical gaps in our understanding of the threat oil and gas development poses to public health, and was among the reasons cited in Governor Cuomo’s decision to ban fracking in New York State.

For Coming Clean and others across the country, this kind of community-based participatory science is changing the way science is conducted and, most importantly, what comes after the data collection and analysis is complete. In both the dollar store research and the oil and gas science, the effect of the science was to strengthen existing organizing campaigns for community-based solutions. The “good old days” when we waited for scientific proof to change the world are over, if they ever existed. Now science and citizen organizing together are changing the rules of the game, the outcome, and who gets to play.

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  • Matt G

    I love the notion of communities becoming DIY type living workshops which gather and test information on their own. I am very interested in this general issue and have done a fair amount of work around these ideas.however growing food and holistic health have been my focus, but at some point hopefully communities can look at all these new opportunities which await us.