How researchers bring “forever chemicals” data back to the communities that provide it: “It’s data from their bodies, from their homes.”

Among terms like ozone, warming, and other jargon typically found in environmental news stories, a new phrase has taken over headlines: “PFAS,” which is short for per- and polyfluoroalkyl substances. Distressingly nicknamed as “forever chemicals,” they’re used in manufacturing processes, found in consumer products and can leach into food and water systems. These chemicals have been linked to health problems like increased cholesterol, immune system disruption and certain cancers. And thanks to massive coverage, more people understand that they’re basically… everywhere.

Phil Brown is a university distinguished professor of sociology and health sciences at Northeastern University and director of the Social Science Environmental Health Research Institute. He has been researching environmental health since the 1980s and PFAS since 2014 — before they began flooding environmental news stories. Early in his career, researchers didn’t typically report data back to participants, so it was uncommon for scientific findings to reach the public without journalistic intervention. One reason for that was a culture within institutional review boards, committees that monitor the ethics of scientific studies anywhere that research takes place.

“We actually had to fight with institutional review boards who didn’t think you should [share scientific findings], that this was somehow compromising privacy or confidentiality,” says Brown.

But the “the right to know” and “the right not to be polluted,” are important ethical concerns for Brown. He has long felt that people impacted by pollution deserve to know about it — especially those who participate directly in studies. In addition to his research on PFAS, Brown uses participatory-based research and focus groups to explore the ethics of sharing scientific discoveries with participants and impacted communities. (See more of Brown’s published work in the journals Environmental Research and Environmental Health).

He promotes a method called report-back, where researchers send participants’ a copy of their data collected from the scientific study in which they participated. Brown’s PFAS Project Lab is an example of this work in action, the lab outputs PFAS-related findings in accessible formats like graphs and written reports. Although Brown attempts to practice report-back in his own research whenever possible, some IRBs are still reluctant to allow this practice.

The Science Media Lab sat down with Brown to hear his take on researchers’ roles in informing the public about PFAS. The following is an edited and condensed version of that conversation.

Why has there been a culture of hesitancy within IRBs to allow study participants access to their data?

One of the big reasons was that they thought it would alarm them and that [sharing] is somehow compromising privacy or confidentiality.

Our point of view is we’re in public health. Our goal in public health is educated alarm. Autonomy is one of the criteria of IRBs, so we believe that [by educating] we are creating participant autonomy.

We report the data back to the participants. And our point of view [is]: it’s data from their bodies, from their homes. Of course they should have access to it. And that is still a very big issue. Our team has really been national pioneers in pushing that.

Has there been a change in the way scientists, IRBs and the media inform the public of scientific findings since you began environmental health research in the 1980s?

There’s an enormously large amount of funded research between activists, community groups and scientists. That kind of joint collaborative work — a lot of it is community based participatory research — has been very effective. And there are some places where these community groups do their own scientific testing.

Environmental justice groups pushed [community involvement in research and findings] back in the early 90s. And [the National Institute of Environmental Health Science] was the first federal agency to really take that up in great detail. NIEHS was actually a pioneer in having community groups on the review panels for proposals, which is a very innovative thing to do for a federal science agency.

We’ve had several grants for teaching researchers and teaching IRBs and teaching community groups about how to do this report-back. One of the results of our work over two full decades of report-back work, in collaboration with Silent Spring Institute, is that NIEHS a few months ago issued a request for research proposals to fund research on report-back.

How have you convinced IRBs to allow you to report data back to participants?
We located researchers we knew that were doing this — there weren’t many others — and said, “Look, here are some other existing academics and non-academic grantees that have been doing this work, and it hasn’t alarmed people.” And that we’ve started to write and publish about this, to show that people actually appreciate this, that they want to do it, that they want to have that information. So we educated them.

What are some of the communication strategies you use to bring findings to communities?

My project REACH has a lot of online fact sheets and brochures. And we have medical guidance documents both for individuals and for physicians. We also have a continuing medical education course that is actually designed so anybody can view it free… we’ve very consciously designed it so that community residents could watch it and understand.

In this REACH project, we have three community groups that we work with directly. They [distribute resources] through the National PFAS Contamination Coalition, NPCC, which is all communities that have been seriously impacted by PFAS. The community groups are involved in the whole planning of [our conferences] and many of them speak on panels. That conference and our website are ways [we communicate findings]. We do webinars with other groups that do PFAS work, like the Green Science Policy Institute and the Collaborative for Health & Environment.

With IRBs’ increasing allowance of report-back alongside increasing media coverage of PFAS, do you feel there is currently a good flow of information among the public on this topic?

Well, there’s always more to be done. One of the things that we hope for is that state agencies will have information on their websites. A few years ago, we surveyed a lot of the state environmental agencies and health agencies to see what they had. It wasn’t that great.

[Some federal agencies’] stuff is not up to date as it should be. And then they are not pushing medical monitoring and blood testing in a way that we are, so they need to upgrade the level of advice they’re giving.

In the internet-era, it can be very easy to overload on information and stress about the state of the world, especially with environmental-related topics like PFAS. What can individual consumers of PFAS news do to help the problem?

They can get involved in a lot of ways. Consumer action has been very effective in getting some very large corporations to remove toxics from their products… They know that kind of position is good for business and it’s also good publicity for them to say, we’re cutting down on toxics in our supply chain.

There’s a lot of effective activity, not just for PFAS [but] for flame retardants before that, for BPA, for phthalates, for parabens. So you see enormous amount of input from consumers, both as individuals and organizing through advocacy groups to do that. You also see a lot of action at the state level, where activists will pressure their state legislatures to do different kinds of regulations or bans.

That’s a very good route because that helps to cut it off at the upstream area. You don’t want to wait until it’s downstream and you’re going into a store with your phone apps and searching every single product you buy to find out. Because we really don’t think this should be individual responsibility to spend your life avoiding toxics, we should get rid of them upstream.

Story from the Science Media Lab.

Last Updated on February 23, 2024