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Researchers still looking for Hyannis residents to participate in national PFAS study

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Silentspring.org
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Silent Spring PFAS study logo.

Hyannis is one of a handful of sites around the U.S. chosen by the CDC to be part of a study on the effects of the chemicals known as PFAS.

Researchers want to better understand what exposure to PFAS can do to humans in the hope of inspiring new regulations. But there's a problem: Participation in the Hyannis portion of the study has been low.

CAI's Kathryn Eident talked with Silent Spring Institute scientist Laurel Schaider, who's group is coordinating the study, about why people may be reluctant to sign up.

Eident Remind us, what is this study about? This study is not just happening in Hyannis.

Schaider The CDC is funding research teams in seven different states to better understand how a common class of water contaminants called PFAS affect our health. So, Silent Spring Institute is leading one of the seven studies and our work is being conducted in Hyannis as well as in the town of Ayer, west of Boston.

Eident Why was Hyannis picked to be part of this study? I imagine there are a variety of sites around the country that could have been chosen for this.

Schaider Hyannis did have higher levels of PFAS than any other public water supply in Massachusetts and was in the top 1% of water supplies across the country, according to testing from 2013 to 2015.

The good news is the Hyannis Water System has gone to great lengths to address the fast water contamination. Now, all of the water in Hyannis is being filtered to remove PFAS.

However, people who lived in Hyannis back when the water had higher levels of PFAS likely had above average exposures to these chemicals through their water. And that does provide an opportunity for researchers to study and better understand how PFAS chemicals can affect our health.

Eident So, this study has been underway for a while now and you're looking for about 1,000 people to participate between your two study sites. Most of those, though, you would like to participate are from Hyannis. But unfortunately, participation has been pretty low. Fewer than 200 people have signed up. Do you have any theories as to why participation hasn't been as robust as you'd hoped at the start of the study?

Schaider Well, I think one obvious challenge has definitely been the pandemic. I think another challenge is that we're looking for people who lived in Hyannis in 2016 or earlier. And I think another potential reason is that the water supply has been responsive to the water contamination issues and responded quickly to put in place new treatment. So, some people may feel like the problem has been solved and so that might take away some of the immediacy that people might have felt if we had started the study closer in time to when the water contamination issues were still ongoing.

Eident Who would you like to sign up for this study?

Schaider We're looking for people who lived in Hyannis between 2006 and July of 2016. And there are a couple of steps. We have a short screening questionnaire that we go over with people by phone just to make sure they are eligible and to set up a time for them to come to our study office.

And it's a lot like going to the doctor. We do collect a sample of blood and urine. We do some body measurements height, weight, blood pressure, waist circumference, and collect some information while you're in the office with us.

And then, the second part of participating in the study involves a questionnaire. We ask questions about where people have lived and worked over time. We have some questions about their health history, and we do have some questions about their water consumption patterns as well.

And then finally, for children ages 5 to 17, we do ask them to come back to our office for a second visit. We have a series of what are called neurobehavioral tests. These are vocabulary exercises, puzzles and drawing, and it's designed to help us understand whether fast can affect brain development.

Eident Why is it important that you get the 900 people from Hyannis to participate in this study? What's the bigger picture here?

Schaider At a broader level, the Cape has an opportunity to be part of this visible study that in the future will inform the development of new drinking water standards and other regulations to protect people's health.

At an individual level, participants do receive gift cards for being part of the study, and they also receive some information, as well. We'll report back the levels of PFAS in people's bodies. There was recently a National Academies of Sciences report that recommended that people who've had potentially elevated exposures be offered PFAS blood testing. It can be difficult to get that testing and often costs individuals hundreds of dollars. But that's something that participants do receive for free if they're part of a study.

So, people can gain information about their own health, as well as contributing broader scientific information to improve our understanding of this major public health issue.

Eident What if somebody is worried about privacy regarding their just personal information?

Schaider In the same way that your information is protected when you go to the doctor, we also take extensive measures to protect our participants' privacy. We don't even let other people know that you're in the study, much less sharing any information that you share when you're participating.

Eident Laurel Schaider, Senior Scientist at Silent Spring. Thanks for talking about the fast study and the types of people you're hoping will sign up.

Schaider I appreciate this opportunity. Thank you.

Learn more about the Massachusetts PFAS and Your Health Study here.

This interview was lightly edited for grammar and clarity.

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Kathryn Eident was the Morning Edition Host and Senior Producer of News until November 2022.