They couldn’t get pregnant. No one told them their ovaries held 'forever chemicals.'

Jun 27, 2023

Microbiologist Jessica McCoy watches her kids play at a park in Charleston, S.C. on Jul. 17, 2023. As a graduate student, years ago, she detected toxic PFAS chemicals in the ovaries of fertility clinic patients. Tragedy disrupted her plans to educate the patients about their harmful effects. Clare Fieseler/Staff

The researchers started in an alligator pond and ended up at a fertility clinic. They were looking at bodily fluids — first in large reptiles, then humans — searching for a group of environmental contaminants that even the U.S. government didn’t have a handle on, clueless still about their ubiquity and potential harm.

The South Carolina scientists, a small group interested in harms to reproduction, detected these chemicals known as PFAS floating in the ovaries of women struggling to get pregnant — a first-of-its-kind discovery. Then, suddenly, the lead scientist died.

A graduate student took charge, eventually publishing their findings in a scientific journal. But without their leader, famed researcher Louis Guillette, the research program dissolved. No press release went out. No one told the women at the clinic that their ovaries held toxic contaminants. No one mentioned that the source of their infertility could be hiding in the cosmetics they wore or the water they drank.

Did they have a right to know?

“Truly eye-opening,” said Jessica McCoy, remembering what it was like being that graduate student and measuring PFAS concentrations in the donors’ blood and ovarian fluid.

McCoy graduated from the Medical University of South Carolina soon after publishing the group’s results. She wanted to lead a patient education program at the clinic about PFAS, but Guillette’s sudden death at the age of 61 made it hard: “We just didn’t make it that far.”

MUSC researcher Louis Guillette died suddenly in 2015. Guillette, pictured here on Jul. 8, 2011 at the Tom Yawkey Wildlife Center Heritage Preserve, studied alligators as sentinel species for environmental contamination and its potential impact on human health. File/Wade Spees/Staff

Guillette died in 2015, eight years before the makers of PFAS settled billion-dollar lawsuits for contaminating public water. His death came three years before Mark Ruffalo made a blockbuster film based on the true story of the very first PFAS lawsuit — the one that uncovered DuPont’s decades-long knowledge of human birth defects linked to PFAS. DuPont said nothing, too.

The company stayed silent after discovering in 1981 that two babies, born to workers exposed to a PFAS chemical now known as PFOA, had eye and facial defects. Another baby, similarly exposed, had PFAS in his cord blood. Not only did DuPont not communicate these discoveries to other employees, it outright denied the adverse pregnancy outcomes to employees in an internal memo. DuPont failed to notify federal agencies about PFOA's harmful effects for decades.

When asked why DuPont didn't tell their female workers of known harms connected to PFAS chemical exposure, a company spokesman told The Post and Courier that he "couldn't comment" because the company "has never manufactured" the chemicals. DuPont has consistently and confusingly responded in this way, passing the buck to what it calls a "completely different company" named Chemours, which DuPont spun off in 2015. The New York Times called the company split a deliberate "blame-shifting exercise."

The suppression of this and other harms linked to PFAS are well documented in previously secret DuPont records now archived at the University of California, San Francisco.

The harms of PFAS chemicals are no longer secret. Dubbed "forever chemicals," they now regularly make headlines: they’re being found in period products and on military bases near cancer clusters.

The chemicals are synthetic and, once they get into the environment, they don't break down. A PFAS chemical was once the secret sauce that made Teflon famous for making non-stick pans. They are still found in an abundance of water- and grease-resistant products. They're even found in some firefighting foams.

Six PFAS compounds are on the cusp of being regulated in America’s drinking water for the very first time. The U.S. Environmental Protection Agency said new rules may be finalized later this year.

Long before the lawsuits and Hollywood attention, researchers were already gathering evidence that PFAS chemicals did major harm to the human body, especially to women and fetuses.

And, like the women tested at the Coastal Fertility Specialists clinic in South Carolina, the vast majority of people who donated blood, urine and bodily fluid to these investigations have never been told of their exposure.

The case of the S.C. fertility clinic sheds light on the ways PFAS research for years hasn’t reached the ears of the people contaminated with the toxins, the ones who could have actually done something about it.

Louis Guillette’s death was devastating, but the disruption to his research program didn’t have to be. America’s research institutions have many jobs. Buffering science from the calamities of unexpected death, destruction and loss of funding are among them. That’s why Julia Brody, founding director of the Massachusetts-based Silent Spring Institute blames the institutions — not the researchers themselves — for not informing fertility clinic patients.

Researcher Thomas Rainwater holds blood samples taken from a female alligator on July 8, 2011 while the late MUSC researcher Louis Guillette (not pictured) holds the alligator. This research on alligator reproduction led Guillette to suspect that environmental contaminants, like PFAS, were also affecting human reproduction. File/Wade Spees/Staff

Institutions, like MUSC, maintained woefully outdated ethical standards that have kept PFAS research subjects in the dark, said Brody. These have blocked the flow of PFAS knowledge back to subjects.

The women who volunteered to be part of the S.C. fertility clinic PFAS study accepted a consent form that made no mention of “PFAS” or the long-hand scientific term “per-and polyfluoroalkyl substances.”

They only knew that they were being asked to volunteer because they had failed to get pregnant naturally, and that their blood and ovarian fluid would be tested for “potentially harmful substances that have been released into the environment.” The form indicated that the women were “waiving” informed consent. They would not receive any more communication about research findings.

In other words, even if McCoy and her fellow researchers wanted to notify the women of their chemical exposure, they legally couldn’t unless the women, somehow, re-consented.

In 2013 and 2014, when the women were recruited at the clinic, this was the standard policy at MUSC for research deemed “minimal risk.” But in 2019, to be in compliance with new federal policies, the university changed how they treated research subjects.

Now, researchers of all studies done at MUSC must tell subjects whether any "clinically relevant" findings about their health results will be returned to them. But what is "clinically relevant?"

Elevated PFAS levels in the human body have been linked to a laundry list of health effects, including decreased fertility, high blood pressure during pregnancy, developmental delays in children, hormonal disruption, reduction of the immune system, and an increased risk of certain cancers. Yet their detection in a person’s body is still not deemed “clinically relevant” by some institutions.

In 2018, an expert committee convened by the National Academies of Sciences, Engineering, and Medicine, the country’s most revered professional organization of scientists, reviewed the pros and cons of sharing individual research results with study participants. It concluded that the old restrictions, the ones that kept South Carolina fertility patients in the dark, no longer made sense.

The committee recommended giving study participants the right to decide for themselves whether to receive their results, not making the results pass some obscure bar of “relevance.”

But this is just guidance. A research participant’s “right to know” is not baked into law.

When it comes to PFAS, the “right to know” movement is still being pushed along by a few passionate researchers, like Dr. Susan Pinney of the University of Cincinnati. In 2016, she chose to notify the parents of her research subjects, all of them girls under 8-years-old living in Kentucky and Ohio, that she and her colleagues had detected “unexpected” elevated blood levels of the particularly harmful PFAS chemical, PFOA.

Her university tried to stop her.

"I ran into resistance from colleagues … they said the (women) won’t understand when we tell them their kid's PFAS levels," said Pinney. She did it anyway: "Women want to know."

According to Brody, of the Silent Spring Institute, research participants’ questions don’t always align with the researchers’ questions or views. Her institute’s own community engagement has found that women, in particular, are interested in any detection of harmful toxins in their bodies or their children’s bodies. This holds true, she said, even if the level of contaminants fall below what is deemed safe at the time.

Relevant to the S.C. fertility clinic study, there aren’t clear metrics for safe amounts of PFAS in ovarian fluid or most bodily fluids; our knowledge about safe levels of PFAS stops at water and blood.

Maybe PFAS concentrate in the ovaries, maybe it’s more diluted, said Jaime DeWitt, a professor of pharmacology and toxicology at East Carolina University in North Carolina. "We just don’t know." But maybe that doesn’t even matter.

The government’s own understanding about PFAS and “safe” levels has dramatically changed in the past decade. For PFOA and PFOS, the two more notorious kinds, the Environmental Protection Agency announced in 2016 that any concentrations in drinking waters above a threshold of 70 parts per billion were considered “dangerous.” Today, the agency’s stance is that any amount of PFOAs and FPOS is dangerous.

Knowledge around the dangers that PFAS pose to fertility has also changed. Over a decade ago, McCoy and Guillette believed that PFAS were affecting the reproduction of alligators. They had a hunch it could be the same for humans.

When they published the first-of-their-kind findings that PFAS levels were correlated with decreased reproductive health in 36 South Carolina women, the researchers wrote a call to action: do more testing like this, with more women trying to get pregnant.

Their research wish came true in 2020 when researchers started testing the frozen blood of 382 women living in Singapore who, years earlier, were part of a study about pregnancy and metabolic diseases. They were not yet seeking fertility treatment but had just started to try to get pregnant naturally. The researchers found reproductive health was compromised — by a lot.

Higher levels of PFAS chemicals in the women’s blood was linked to at least 30 percent lower chance of conceiving a child naturally.

But, just like the South Carolina case, the women in Singapore never received their results and still have no idea they were ever part of a major PFAS study.

“Many (PFAS) studies don’t return results,” said the study’s co-author Dr. Dania Valvi, matter of factly. “The reason why we didn’t is because there are no safety thresholds … no way to communicate a health risk."

As an associate professor at the Ichan School of Medicine at Mount Sinai in New York, she’s always thinking about the “clinical practice” or in layman’s terms, the doctor’s office setting. Sharing PFAS results with these women who donated their blood was never a consideration because she wouldn’t know what to tell these women about what to do about it.

“They’re in pizza boxes, they’re in microwave popcorn … they’re even in tea bags,” said Valvi. She thinks reporting back results would make more sense for her and other researchers if the medical community actually promoted PFAS exposure prevention. "We need to take (PFAS) into consideration like we currently take into consideration lead and children."

There are ways to remove PFAS from the body. None of them are ideal or medically approved with PFAS in mind. Donating blood is one way, though it might pass the chemical burden to someone else. Women eliminate PFAS during menstruation, childbirth and nursing — its own ethical can of worms. Dialysis removes certain PFAS as does cholesterol-lowering medication.

Preventing future exposure is far easier. Table-top water filters can remove many PFAS from water. Women can reduce their intake of certain fish as well as foods that come in anti-grease packaging, like microwave popcorn. Avoiding cosmetics is also a safe bet.

When the ground-breaking collaboration between Guillette’s group and Coastal Fertility Specialists first formed, the clinic's director's spoke to The Post and Courier, expressing an interest in using the contamination research results to educate his patients who were failing to get pregnant.

"Imagine if we could measure your blood and say, stop drinking out of plastic and stop using hair spray and your reproduction will improve," said Dr. John Schnorr, back in 2013. He founded and serves as the medical director for the fertility clinic. Schnorr estimated that, for about 20 to 25 percent of couples seeking help, his clinic had no answer for why they get pregnant or lose a fetus.

Speaking in August 2023, Schnorr confirmed that the women involved in the FPAS study at his clinic were not told of their results.

Coastal Fertility Specialists in Mount Pleasant on Wednesday, Aug. 9, 2023. Daniel Sarch/Staff

In Schnorr's view, the scientific understanding around PFAS and how it affects infertility is is still "three leaps away" from him being able to advise his patients about it.

"If you go to a patient and tell them ‘hey, we found this is in your bloodstream,’ ... did we make anything better by doing that?" asked Schnorr. “You probably cause more anxiety and harm, because we don’t even know if it's a problem yet. And, also, we don’t know how to correct it or get it out.”

Thousands of Americans donate their blood and urine every year to make PFAS research possible. Universities and institutions are keeping them in the dark about their PFAS exposure and, according to a new investigation, the silence doesn’t stop there.

When the S.C. fertility clinic study was published in 2017 — the world’s first linking PFAS exposure and negative “reproductive health” among U.S. women who failed to get pregnant — the Medical University of South Carolina issued no press release or social media post.

This is part of a pattern. Since 2018, universities worldwide have failed to publicize PFAS findings with direct health implications about 90 percent of the time.

Dozens of these findings were relevant to women’s health, including one linking PFAS to gestational diabetes, another linking PFAS to ovarian cancer, another was the pioneering discovery that higher PFAS exposure led to babies being born dangerously early. Universities, who put out multiple press releases a week, failed to do so in each of these cases.

MUSC provided the following reason for not publicizing the S.C. fertility clinic study: "As MUSC is a large research institution and has hundreds of active ongoing studies, it is not feasible for us to publish a press release about every research study, but we love sharing exciting discoveries and publications that may be newsworthy …. To the best of our knowledge, the PR team was not made aware of this specific research study or ensuing publication, likely because the PI (principal investigator) died while the study was ongoing."

The Green Policy Institute, a public health nonprofit based in California, was the first to discover this phenomena of PFAS findings being put under-publicized. They looked at 273 PFAS research studies published in a two-year window and only 8 percent of them were accompanied by a press release. The group published these findings last month. The burden for fixing this, said Rebecca Fuoco the institute’s director of science communication, is on the universities and institutions.

“It reminds me of lead and asbestos … where scientists were publishing on the harmful effects for decades,” said Fuoco. “There’s lag between when scientists are quietly publishing about it and when someone does something about it.”

DeWitt, the East Carolina University researcher, said scientists aren’t taught how to talk to the media. Many are told not to be activists or to let universities talk for them. “Seriously, what’s wrong with being an activist for people’s health? … Probably we are repeating history here.”

To this day, no accessible digital footprint exists for the S.C. fertility clinic study. The only way someone could find it is through a paywalled scientific journal; most journals have expensive paywalls. Downloading McCoy and Guillette’s nine-page findings about the PFAS chemicals detected in South Carolina women who failed to get pregnant costs $39.95.

Today, the U.S. government estimates that half of the nation’s drinking water could contain 'forever chemicals.' So many consumer products still pose risks. Scientists have even found PFAS chemicals in baby furniture stamped with eco-labeling.

“It’s a public health threat that's gone unrecognized for decades,” said Robert Bilott, an environmental attorney and partner at the law firm Taft Stettinius & Hollister. Mark Ruffalo played him in the 2018 film "Dark Waters" which portrayed his journey as the very first lawyer to sue DuPont for knowingly causing harm in areas where they made and, in some cases, dumped FPAS chemicals.

Over 25 years later, Bilott is still in the fight. Hundreds of lawyers have joined him.

Charleston's federal courthouse (above) is where thousands of claims are being heard in the courtroom of Judge Richard Gergel, in the United States District Court for South Carolina, against multiple PFAS makers, including 3M and DuPont. File/Staff

In June, Dupont and its two sister companies settled a $1.1 billion lawsuit. That same month, 3M said it would pay out $12.5 billion to settle a similar lawsuit over PFAS contamination of drinking water. In neither settlement do these companies admit wrong-doing. In the Charleston courtroom of U.S. District Judge Richard Gergel, more than 4,000 plaintiffs allege similar claims against PFAS makers which are still being litigated in a multi-jurisdictional fashion, all lumped together at a scale not seen since the lawsuits against Big Tobacco in the 1990s.

The Guardian reported that what Big Tobacco paid out — more than $200 billion — could soon be eclipsed by the final bill FPAS makers will pay after all the lawsuits have run their course. Beyond water utility settlements, the companies will face personal injury suits brought by states over the PFAS contamination of lakes, rivers and wildlife.

South Carolina is doing that now.

S.C. Attorney General Alan Wilson filed a lawsuit earlier this month against 3M, DuPont and others to hold them accountable for knowingly contaminating the state's drinking water and natural resources. Wildlife are ingesting these chemicals and, just like Guillette's alligators, are not immune to their harm.

Forever chemicals are being found nearly everywhere. Now that the problem has reached the courts, and with very high stakes, some experts see the justice system as an agent of change. Courts can and have compelled FPAS makers to notify communities if their own industrial activities have contaminated local water supplies.

It’s unclear if and how the courts could compel universities to notify research subjects if they test high for PFAS toxins.

Last year, the national academies put out additional guidance about a research subject’s "right to know" — this time it was specific to people exposed to PFAS. An expert panel determined that researchers and clinicians have an ethical responsibility to let a person know of any PFAS testing result and advise those exposed. The Silent Spring Institute just launched PFAS Exchange — a website that helps people interpret their own results.

But what about the 36 South Carolina women who were never given a "right to know?" It’s been almost a decade since McCoy, the then-graduate student, sat in a lab and discovered that industrial chemicals had reached their reproductive organs.

On a steamy July morning, McCoy sat a shaded picnic table at a Charleston playground. Her daughter toddled over to her, carrying a stuffed narwhal. Now a mom of four and a visiting assistant professor at the College of Charleston, McCoy still thinks about those women at the clinic. It bothers her that had her advisor not suddenly died, things could have been different.

“I know they were never directly told the outcome," she said. "This was all such exciting work but …" Her sentence trailed as she looked at her kids playing in a patch of wood chips while she tried to express how she felt all these years later.

"I don't know, maybe we were just ahead of our time."

Were you a patient of Coastal Fertility Specialists in Mount Pleasant, S.C. between 2013 and 2014? Do you believe you were been part of the study described in this article? If so, we’re interested in hearing from you.

Your identity will be kept confidential. You can contact our reporter at [email protected].

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