UCS Blog - CSD (text only)

The Masked Syndrome: HIV, Health Disparities, and the Two-Pronged Approach

“I have to tell you something” he said to my father on the phone. My father could sense immediately the conversation would be pivotal. “Cancer?” my father asked, to which he quietly responded, “Much worse.” He was my mother’s uncle; he was hilarious, hardworking, and passionate. He was also a gay Armenian man, and his sexual orientation was a subject of shame, criticism, and volatility in many cultures like my own. It was 1989, and the public, including my father, knew little about human immunodeficiency virus or HIV. Within days of this phone call, my parents flew to see him. I often think about this moment and my mother’s uncle considering his diagnosis the worst news he could possibly share. I think about the shame he felt and the vulnerability he displayed in sharing his status. This moment of sheer vulnerability and honesty has been shared by over 36 million individuals and their families worldwide.

Disproportionate impacts on already vulnerable communities

Despite significant advancements in the understanding of HIV over the past thirty years, the epidemic disproportionately affects disenfranchised communities. The health disparities are striking, affecting communities of color (Black and Latinx people account for more than sixty percent of cases), sexual minorities, and the intersection of these communities (Black gay males account for about half of cases). A number of crucial risk factors have been identified, including poverty, substance use, low educational attainment, unequal access to health care, and discrimination. These disparities are present not only in the transmission of the disease, but in the diagnosis and treatment as well. Research has shown that compared to non-Hispanic whites, racial/ethnic minorities have a higher likelihood of virologic failure and resistance; being prescribed less efficacious and more toxic treatment regimens; brain and cognitive impairments; poorer quality of life; and early mortality. Additionally, racial/ethnic minorities report experiencing discriminatory health care experiences and overall distrust toward health care providers. The access to quality care in these communities is heavily impacted by a number of social, environmental, and psychological factors.

The two-pronged approach to reducing disparities

The HIV epidemic is unique in that transmission is dependent on both behavioral risk factors and the federal government’s historical role in the silencing and marginalization of minority populations. Though significant public health advancements and advocacy efforts have been made over the course of the epidemic’s history, these benefits have not necessarily been shared equally throughout the U.S. population. In order to better conceptualize and treat this syndrome, a two-pronged approach is needed to better integrate research findings with social justice efforts. First, research will continue to aid in the identification of risk factors and protective factors to prevent further damage. Second, policymakers and organizations must integrate these findings and mobilize in order to combat social injustice and properly communicate this information to all.

Advocating for compassionate, accessible and equitable care

Research has shown that discrimination is a major barrier to care and facilitates the transmission of HIV and disease progression. Currently, explicit protections against discrimination based on sexual orientation/gender identity do not exist at the federal level, which can lead to significant problems in accessing health care. More than a third of LGBTQ+ people of color have been refused treatment and/or feel scared to access health care resources due to fear of discrimination. This results in low accessibility of care and subsequently worse health outcomes. Organizations such as the Prevention Access Campaign work to devise equity initiatives such as U=U (Undetectable=Untransmittable), a global community of advocates and researchers working to disseminate the crucial finding that individuals on effective treatment with an undetectable level of HIV in their blood have a negligible risk of transmitting HIV sexually. This may assist in the eradication of the stigma associated with sexual disease transmission and encourages diagnosed individuals to remain adherent to treatment regimens to keep both themselves and their partners healthy. It is crucial to continue to combine research findings with advocacy work in order to bring together professionals from a number of sectors to increase communication, understanding, and prevention of further risky behavior.

HIV can be characterized as a syndrome with two faces. The face of the disease we see corresponds to the physical and cognitive burden associated with the diagnosis of a chronic disease. The second, and arguably more important part of the syndrome is a masked face tucked behind the first, corresponding to the internal turmoil, which includes enduring stigma, shame, and discrimination. Stigma is considered a major predictor of mortality within this population and serves as a barrier to accessing both HIV testing and treatment.

It was this masked face that led my mother’s uncle to respond with “much worse” and it was this face that had kept his life, sexual orientation, and diagnosis a secret from everyone he loved. Resiliency in this community is the pulsing, beating heart allowing them to overcome adversity, despite this diagnostic label. This resiliency has been tested repeatedly, yet this community has continued to laugh, sing, advocate, and share their experiences, shining bright and dispelling the grim social pressures casting a shadow on their lives. The time has come for the American people to enact change; let us collectively stand behind a relentlessly strong community who need not hide behind any mask.

 

Maral Aghvinian is a doctoral student at Fordham University in the Bronx, NY specializing in clinical neuropsychology. Her research interests include the intersection between neurocognitive functioning, health behaviors, cross-cultural issues, and health disparities in highly stigmatized, chronic disorders. Maral’s primary goal is to use a biopsychosociocultural framework to better understand the relationship between the role of stigma and factors that contribute to disparate health outcomes in underrepresented populations. By conducting clinically informed research, she hopes to eradicate the climate of stigma surrounding mental health, especially in marginalized groups.

Science Network Voices gives Equation readers access to the depth of expertise and broad perspective on current issues that our Science Network members bring to UCS. The views expressed in Science Network posts are those of the author alone.

Scientists Find Serious Flaws in Proposal to Delist Endangered Gray Wolf

Photo: Eric Kilby/Flickr

According to a five-member peer-review panel, the administration’s proposal to delist the endangered gray wolf (Canis lupus) from the Endangered Species Act (ESA) is chalk full of scientific errors that misrepresent the scientific consensus regarding wolf conservation and taxonomy. One member of the panel even said that the proposed rule seems as if it were written with a predetermined conclusion to delist the endangered gray wolf, and then the administration cherry picked evidence they thought supported their conclusion. “It looks like they decided to delist and then they compiled all the evidence that they thought supported that decision. It simply doesn’t support the decision,” said Adrian Treves, an environmental studies professor at the University of Wisconsin. Indeed, the 245-page report provided to the US Fish and Wildlife Service (FWS) by the peer-review panel says that the evidence doesn’t support the administration’s conclusion to rollback protections for the gray wolf across the lower-48.

The peer-review process at FWS

Peer-review is the bedrock of publishing scientific results. Scientists write up the results of their study in a paper that is then anonymously reviewed by peers in their field. The review ensures that the questions scientists are asking are addressed by the right methods and that results are interpreted correctly. If one, it only takes one, peer reviewer finds a major fault in your study, and the editor of the journal agrees that the fault is legitimate and should be addressed, then that fault must be addressed before the results can be published. This may mean further analysis of data, conducting more experiments, or if the scientist(s) cannot address the fault then a rejection of publication of results. According to the recent peer-review of the FWS’s proposal to delist the gray wolf from the ESA, the proposal contained several scientific errors. This means that the administration may address the errors elucidated in the peer-review and produce a proposal that is in-line with the best available science or retract the proposal altogether.

Science-based agencies in our government have peer-review processes in place, and these are especially important for implementing policies that are required by law to be informed by science. The ESA is one such policy that requires decisions to list or delist a species to/from endangered status to be based solely on the best available scientific and commercial data. In 2016, the FWS revised their peer-review policy after encouragement from the Union of Concerned Scientists, Project Coyote, and a letter signed by nearly a thousand conservation biology experts across the country. The new policy entrusts the scientific evaluation of species listing and de-listing determinations to an external committee of scientists who are best suited to assess the scientific evidence and make a public recommendation to the agency, based solely on the scientific and commercial data available, as the ESA requires. The new policy also took additional steps to make the process more transparent by making the peer-review documents available to the public, as well as the conflicts of interest forms from the peer-review panel. The updated policy strengthened the process and it was a step in the right direction for science by FWS.

The Gray Wolf’s Controversial History

The gray wolf has long been a controversial species regarding its endangered status. In 2011, ESA protections were removed for wolves in the Northern Rockies by Congress – the first time ever that the legislative body delisted an endangered species. The scientific community largely agreed that this rollback of protections was not based on the best available science.

Since the gray wolf’s protections under ESA were removed in the Northern Rockies, interest groups have moved to have the wolves’ protections removed across most of the lower-48. The FWS submitted a proposal for this delisting in 2013, but an independent peer-review as well as a majority of public comments against the proposed delisting delayed the agency’s decision. The Trump administration proposed to move the delisting of the wolf across the lower-48 in March, 2019. But the scientific consensus remains the same – the gray wolf still needs protections afforded to it by the ESA.

Science Says Protect the Wolves

Treves is concerned that if protections are lifted for the gray wolf then illegal poaching will increase and this could decimate the population like has happened in the past, a concern that Treves has published on previously. Rancher and hunters continue to express concern that protections for wolves will increase their population such that the carnivore will annihilate stocks of prey (e.g., elk, sheep, cows). But there is no scientific evidence that supports killing predators makes livestock safer. In fact, in some cases it seems that killing predators may actually worsen the problem.

The peer-review is in and the experts say that the Trump administration’s proposal to delist the endangered gray wolf is not in line with the scientific evidence. This means that the administration should throw the delisting proposal in the trash because the ESA requires delisting decisions to be based solely on the best available scientific and commercial data. If they move ahead with the proposal as-is…well…seems like that would be illegal.

Photo: Eric Kilby/Flickr

What to Expect from Today’s EPA Scientific Integrity Stakeholder Meeting

Later today, a few dozen advocates will head to the Environmental Protection Agency for a stakeholder meeting on protections for scientific research at the agency in the context of its annual scientific integrity report and scientific integrity policy. The meeting is an opportunity for organizations to ask questions about the report, to give feedback to the agency, and to identify new or emerging challenges to scientific integrity at EPA. Here’s how I expect it to go down. 

Why does EPA hold this meeting?

Scientific integrity policies were developed at federal agencies and departments that do science. In general, they define the role of all staff in conducting and communicating research. The policies are inherently neutral, and designed to prevent censorship or misrepresentation of science in any direction. Anyone inside or outside the agency–from a rank-and-file scientist to a coal company to a medical association.

EPA office building with agency flagThe fact that the EPA does this meeting in the first place is notable. No other agency or department conducts such an event. And I can only imagine what it was like for EPA Scientific Integrity Officer Francesca Grifo to get approval to hold the meeting this time around. The last time I attended the meeting, the House Science Committee rustled up some serious deep state paranoia that even attracted the attention of the Wall Street Journal editorial board. It was wacky.

Invitations go out to hundreds of people and groups that have an interest in science at EPA. I expect industry groups and public interest organizations alike will be present.

What will the discussion cover?

If it’s anything like past meetings, Dr. Grifo will give a (hopefully brief) presentation about what her office has been doing to implement the policy and protect the ability of scientists to conduct research and communicate about their work. Then she will open it up to questions.

So here’s a partial list of what I’d like to know. What is being done to discourage self-censorship among scientists who intuit that agency leaders won’t like their research results? What is morale like among scientists at an agency where senior officials routinely sideline and undermine their work? How often do informal conversations about the policy with EPA staff resolve problems before they become formal misconduct allegations? Are more problems being solved informally, or addressed through formal investigations? Whatever happened to the agency’s stated desire to publish a differing opinions policy? Are there any conversations with leadership about making regular, affirmative statements about the importance of transparency at the agency and the importance of science communicating their results regardless of the political inconvenience of the outcome? Is the White House Office of Science and Technology Policy doing any work to coordinate improvements in policies and practices across agencies? Should they?

I’d also like to hear about whether Dr. Grifo believes that these kinds of protections for scientists should be made permanent. Legislation called the Scientific Integrity Act would do just that: enshrine scientific integrity policies into law to give them more teeth and standardize them across government agencies. It shouldn’t just be a few agencies that are doing this kind of work.

What will the discussion avoid?

What will be more notable is what they won’t talk about. The policy doesn’t address so many of the ways that science has been sidelined from decision-making at EPA. It doesn’t prevent bans on some independent advisors, or prevent proposed restrictions on the use of public health research in the development of public health protections, or prevent attempts to skew cost-benefit analysis. It won’t deal with attempts by the administrator’s office to avoid input from the EPA Science Advisory Board. There likely won’t even be any discussion of whether EPA Administrator Andrew Wheeler understands what a double blind study is.

You also won’t hear about investigations into specific allegations of violations of the scientific integrity policies, as I know from experience that the office won’t comment on ongoing investigations.

But I expect we will hear about some progress that is being made during an unimaginably difficult time for the EPA.

Public Domain

Trump Administration Wrongfully Brands Chinese Scientists as Spies, Hindering Scientific Progress

Photo: Another Believer/Wikimedia Commons

I once thought that international scientific collaboration – of talking to your colleagues from around the world and sharing scientific information that could lead to real breakthroughs in the field – was a topic that was so non-controversial, it was a given. It just makes sense. Getting the best minds together in a room to solve the world’s toughest problems is one of the best ways for science to progress. How could anyone disagree with this?

Apparently, the Trump administration disagrees. At least in the case of scientists who are nationally Chinese. And, in a few cases, American scientists who are ethically Chinese.

There is currently a slew of evidence suggesting that the Trump administration is disproportionately targeting Chinese students, scholars, and scientists for presumed espionage activities in a way that dangerously borders on racial profiling and harassment, which has the real possibility of stifling international progress on the world’s most pressing scientific issues.

Chinese scientists are being targeted…

I’m sure it will surprise no one when I say that President Trump has a habit of carrying out anti-immigration policies. But what has been less focused on is just how detrimental these types of actions are for scientific community. Science, by its very nature, thrives on diversity.

Bloomberg Businessweek recently featured an article suggesting that federal authorities may be developing a mindset that equates Chinese scientists with villainous actors that aim to spy on and steal proprietary information. FBI director Christopher Wray has publicly stated that China is engaging in a “whole-of-society approach” to stealing innovations from US businesses and universities, which include “graduate students and researchers… working on behalf of China,” and thereby attempting to “exploit the very open, collaborative research environment that we have in this country.”

Since December 2017, a number of actions have been carried out by the Trump administration that reinforce this message. Take the National Institutes of Health (NIH), one of the most distinguished and wholly scientific organizations in the federal government. The NIH has started requiring that foreign scientists bring their passports to enter any NIH building and then endure questions about their nationality. Additionally, the NIH has sent letters to dozens of major US research universities in order to obtain more information on certain faculty members with possible links to foreign governments. Science Insider learned that at some of these research institutions, every researcher flagged by the NIH was Chinese-American. Other such actions by the administration include: high-profile arrests of Chinese-American scientists falsely accused of spying; numerous Chinese social scientists having had their US visas revoked; and, a reported plan by the Trump administration to dramatically decrease the visa length of Chinese students studying in STEM fields.

Federal agencies have been making an alarming number of unnecessary arrests of people of Chinese descent. According to one study, these efforts are leading to a tripling of espionage arrests of defendants with Chinese names in recent years. And of these arrests, one of every five were wrongfully accused by authorities; this is nearly twice the percentage of non-Chinese defendants. The author of the paper warned that federal agents and prosecutors may be assuming that Chinese scientists are not here to conduct science, but to spy, “In the same way racial profiling of African Americans as criminals may create the crime of ‘driving while black,’ profiling of Asian Americans as spies … may be creating a new crime: ‘researching while Asian.’ ”

…Which is causing fear in the community

As a result, worry has started to spread through the community. For the first time in recent years, the number of Chinese students enrolling in US undergraduate programs has decreased according to the National Science Foundation, though the trend is being driven primarily by non-STEM majors. In March, several groups of Chinese and Chinese-American scientists wrote a letter that was published in the journal Science expressing concern over “the recent political rhetoric and policies that single out students and scholars of Chinese descent working in the United States as threats to U.S. national interests.” According to the letter, “confusion, fear, and frustration” are spreading among scientists of Chinese descent because of fears of “being singled out for scapegoating, stereotyping, and racial profiling.”

The letter also points out that these policies are stymieing scientific research: “Open data access and data sharing are important for accelerating research advancement and can be implemented without putting the U.S. security at risk. NIH has exposed such policies for years.” By giving in to this culture of bias, the US government is ignoring its long-standing policy on the importance of scientific collaboration. For instance, the Department of Defense issued a memorandum in 2010 stating that the agency “fully supports free scientific exchanges and dissemination of research results to the maximum extent possible.”

Scientific partnerships should not be criminalized

Scientists of Chinese descent are being put into an impossible situation. On the one hand, they have been encouraged for years by their research institutions in the United States to seek out relationships with their international scientific peers in order to work together and solve hard problems. The clearest example of this collaboration comes from cancer research. The NIH’s Cancer wing, the National Cancer Institute (NCI), has stressed the importance of international collaboration in order to improve cancer outcomes in the scientific literature and in the webpage of the NCI’s Cancer Moonshot program (one of the tag lines read “Cancer knows no borders”). There is even a NCI group dedicated specifically to the purpose of international research collaborations.

On the other hand, several of the FBI actions towards Chinese or Chinese-American scientists (i.e. arrests, house visits to ask about “loyalty,” and reading private emails) have been directed at cancer researchers who were carrying out perfectly reasonable scientific partnerships with oncologists in China. And through these actions, the US government may be scaring off brilliant scientists of Chinese descent from conducting research that could help find treatments for cancer.

This is not the first time that anti-Chinese sentiment has been codified into US policy, but we must remember that these actions have a cost. And the cost of this bias could result in the erosion of a rich scientific tradition of collaboration and partnerships between scientists across the globe.

Photo: Another Believer/Wikimedia Commons

The Trump Administration’s Hostility Toward Independent Expert Advice Spirals Out of Control

Shealah Craighead/The White House

Since day one, the Trump Administration has been actively ignoring its own scientists, external experts, and seeking advice from the wrong people. Now, President Trump has further waged war on expert advice by ordering the federal government to rid itself of one-third of its 1,057 advisory committees, getting down to a maximum of 350 advisory committees before September 30th.

Take a minute to process that. Over the course of a little over three months, all agencies will have to arbitrarily decide to get rid of panels that have historically provided valuable advice on a range of issues, not just on scientific matters. The Trump Administration dropped this order on a Friday afternoon in a clear attempt to remain under the radar but this utterly inane policy needs to be called out for what it is: pure dreck. Here’s why:

It’s completely arbitrary

In line with many of the policy decisions that have come from this administration, this order is 100% arbitrary. It appears to be taking a hatchet to the federal advisory system not because there’s a need to cut costs but simply because it can.

Perhaps the best example of this in this order is the maximum number of committees for the government. Why one-third of advisory committees? Why this 350 number? Did President Trump pull this number out of a hat? Does he like the way the number looks or sounds? Your guess is as good as mine.

It escalates a pattern of abandoning science advice

Next, the order requires that agencies terminate committees for which the mission is complete, the work is now obsolete or replaced by another body, or in which the costs outweigh the benefits. What the order of course fails to mention is that agencies already do annual reporting and make decisions about whether a committee’s job is done. The thing is—a good portion of federal advisory committees focus on perennial issues for which there will almost always certainly be a need for expert advice, from animal health to transit safety. How exactly are agencies expected to count the largely unquantifiable benefits of these committees? This is made even more ridiculous when you consider that many advisory committees have been failing to meet and to do the work that’s included in their charters since the Trump administration began. Perhaps the administration was playing the long game, first neglecting its advisors and then moving into phase two of its master plan to use the neglect as a data point to remove the committees altogether.

It’s bad math

The numbers don’t add up. This order does not apply to committees that are authorized by statute or created by presidential order, but does apply to those that are authorized by law (but not required) or were created by agency discretion. This means that the EPA’s Science Advisory Board and Clean Air Scientific Advisory Committee are theoretically excluded. However, according to the Federal Advisory Committee Act (FACA) database, in 2018 there were almost 600 committees authorized by statute and 425 authorized by law or through agency authority.

It seems like no one devising this scheme even took a look at the data that exists on federal advisory committees because if they did, they would know that the one-third rule and getting to 350 committees that aren’t statutorily required doesn’t work with the current exclusions. Then again, this administration cares little for actual data and facts so it’s not surprising it failed to consult experts as this executive order was drafted.

It’s not equitable

This order will hit the agencies with the most advisory committees hardest because they will be faced with the burden of doing cost/benefit analyses and making impossible-to-make decisions about which committees to cut. For example, the US Department of Health and Human Services has 50 grant review panels, so those would be theoretically exempted from this order, but they also have 93 scientific panels including 27 different Boards of Scientific Counselors for a range of public health issues, from drug abuse to occupational health.

How exactly should HHS prioritize some issues that are deserving of independent science advice and others that are not? This is a choice they shouldn’t have to make.

It has a carve-out for private industry

The other exemption in the order is for committees “whose primary purpose is to provide scientific expertise to support agencies making decisions related to the safety or efficacy of products to be marketed to American consumers.” In other words, committees that determine drug or other product safety and are essential in getting products to market in a timely fashion, are considered beneficial enough to keep around but committees that serve other functions could face the chopping block. The administration is choosing to protect committees that help expedite profits of private industry and dole out research money, but spares the committees that provide advice on other government decisions.

If not thousands of experts, then who?

Perhaps the most disturbing thing about this proposal is that the result of shedding thousands of independent experts on 700 advisory committees will be that the Administration will seek advice from individuals that have no business consulting the government (case in point: Myron Ebell) or no one at all to help policymakers make decisions on complex issues.

This is not just an affront to science, because these advisory committees advise on more than just science issues. This is an attack on the way that facts and verified information feed into our government. Its very premise threatens our democracy. We will fight it tooth and nail.

Shealah Craighead/The White House

HBO’s Chernobyl: A Fictionalized Representation of the True Horrors of Sidelining Science

HBO’s new five-episode miniseries “Chernobyl” at the time of this writing is the highest rated TV show on IMDB. I’ll say straight out that the show is a fictionalized account and that I recommend reading Forbes and the New Yorker’s summaries on what the show gets right and wrong. And if you want to know more about the real events of Chernobyl disaster, check out our summary on the topic and our work trying to answer how many cancers resulted from the Chernobyl disaster.

But what got under my skin when I watched the show was how the scientists and politicians interact. Here’s one quote from the show:

“I must tell you– this is why no one likes scientists. When we have a disease to cure, where are they? In a lab. Noses in their books. And so, grandma dies. But when there isn’t a problem? They’re everywhere. Spreading fear.” (episode 2)

And while this scene probably never went down like this in real life (see the New Yorker article), I had to wonder: was there truth ensconced in the fiction? Is it common for scientists to be sidelined by political leaders? While I can’t speak about what exactly happened at Chernobyl, I can certainly speak to the fact that the sidelining of science has occurred for decades in the US, and that it is especially egregious under the current administration.

Why does the TV show feel relevant today?

Incidents like this are not ancient history. Whistleblower protections for scientists are as important today as they were in 1986. And we need to protect our scientists and the science they produce more than ever – science saves lives and political leaders ignore it at their peril. These issues aren’t simply relegated to the Soviet Union, they are happening in the US. Here are some examples of recent attacks on science by the Trump administration, which now number over 100:

  • Ignoring inconvenient scientific truths: The director of US Geological Survey (USGS) ordered scientists to only use climate models that end at 2040, thereby ordering scientists to ignore the worst impacts of climate change.
  • Ignoring scientific evidence of a public health crisis: The Environmental Protection Agency (EPA) has flat-out refused to ban the pesticide chlorpyrifos, a nasty pesticide that decades of science shows can harm the brains of children.
  • Reports buried and ignored by political officials: The White House buried a health study from the Centers for Disease Control and Prevention (CDC) on a chemical class called PFAS (which is super common, it used to be found in Teflon and Scotchgarde) because it was “a potential public relations nightmare.”

While safeguards were put in place at RMBK power plants after the Chernobyl disaster (though it should be noted that wasn’t a perfect solution), the Trump administration has dismantled safeguards put in place at offshore oil rigs after the 2010 Deepwater Horizon oil spill.

“Every lie we tell incurs a debt to the truth”

Again, it should be noted that HBO’s Chernobyl is not a documentary. But the purpose of good fiction is to make you think. And I was definitely thinking.

I was thinking that it angers me that scientists are still being censored today, and that their evidence-based words on issues like asbestos, pesticides, and toxic chemicals are being suppressed and ignored in favor of a more politically-friendly narrative. The science that can save countless lives should never be hushed up simply because it is politically inconvenient.

And so, like the unseen cloud of radiation that erupted from Chernobyl, the current administration’s actions to dismantle science are seeping into our lives and are messing with our health.

Public Domain

One Thing You Can Do to Stand Up for Science This Week

Today kicks off the National Call Out to Protect Scientific Integrity. And UCS is making it easier than ever for you to stand up for science and help restore science to its rightful place in public health and environmental decision-making. This week (and beyond!), we’re speaking out about the Scientific Integrity Act, legislation that would give federal government scientists the right to share their research publicly and protect science in policy decisions from political manipulation.

The Scientific Integrity Act’s main sponsors, Representative Paul Tonko and Senator Brian Schatz, are building support for the legislation within the House and Senate, and co-sponsors are joining the bill on a regular basis. But legislation won’t move, or even get a hearing, without constituent pressure on Congress to demand legal protections for scientists who work for the federal government, from the EPA to the FDA.

That’s why we’re joining with science, environmental, health, and good government organizations throughout the United States to mobilize thousands of people to call their legislators to urge them to support and move the Scientific Integrity Act through Congress.

We’ve made it incredibly easy for you to take action. We’ve developed a resource guide and series of fact sheets that gives you all the background you need to raise your own voice—and then, if you have time and inclination, to organize others to do the same.

We kicked off this week-long series of engagements with a webinar called Power of a Story: How to Use Your Voice to Advocate for Real Scientific Integrity.”  By replaying the webinar, you’ll learn the current state of play of the legislation and get tips on how to compellingly talk about critical yet abstract issues like this one.

Now, we’re calling on people to do the following:

  • Pick up the phone and call your senators and member of Congress (if you got ‘em!) and urge them to support and help advance the Scientific Integrity Act.
  • Share information about the National Call Out to Protect Scientific Integrity on Twitter (or just retweet me).
  • Write a letter to your local paper about the importance of scientific integrity to public health and the environment, and the importance of your elected officials supporting this legislation.
  • Encourage others to participate by planning an in-person or online event.

All you need to do is raise your hand and commit to taking one step for democracy this week. And once you take action, it is even more helpful to us if you can let us know how it went.

From chemicals in household products to the impacts of climate change, scientists need to be able to follow their research wherever it leads—without political interference—and share their findings honestly with the public. If we demonstrate that the public is paying attention to attacks on science, then Congress is more likely to move this kind of legislation, and presidential candidates—including the current president—are more likely to incorporate scientific integrity standards into the reforms that they are willing to advance.

So again, here’s the Call Out action page, webinar, fact sheet series, and resource guide. This week is critical moment to spark the drumbeat of action needed to move meaningful scientific integrity protections forward. I look forward to people joining this week and invite local advocates who want to take action throughout the summer to reach out to my colleague Paola Salas at UCS. Thanks!

Under Our Noses: PFAS Contamination in Southern Colorado

I was born an only child in Colorado Springs, Colorado in 1979. My father, who is a retired military officer, moved us from coast-to-coast and across the country until we finally returned home in 1989. By the time I was 20, I had traveled and seen parts of the Western world that continue to enrich my life. However, Colorado has always held me safe, secure, and nestled in the Rocky Mountains as I continued to mature into adulthood. The quiet solitude the outdoors here provided me just as much ecological insight as scuba diving in the Grand Caymans or walking along the coasts of Hawaii. Now I’ve seen the delicate balance of nature in Colorado disrupted by devastating wildfires and operations from fracking plus other continued operations of big oil and gas.  

There were a lot of wake-up calls to the United States in 2018. Following my own personal revelations, I emerged from my own cave of isolation as a single parent to learn just how bad things have gotten. Seeing the corruption of facts and scientific evidence in my own local community I started working to illuminate truth in others and grasped what an uphill battle it is.

In January 2019, my formal training as an activist began. As an advocate for Colorado’s environment, one of the first things that truly disturbed me to the core was the contamination of drinking water—which I thought I was well-informed upon regarding my involvements in attempting to ban fracking last year in Colorado. The data in front of me stated that immediately south of Colorado Springs the worst circumstance imaginable was already over and done with, the PFC levels detected in water supplies makes it unfit for human consumption.

Contamination of the Widefield aquifer

Fountain Creek flows through the heart of downtown Colorado Springs, past the Martin Drake Power Plant fueled by coal, south-southeast to the communities of Fountain, Widefield, Security, and others in Southern Colorado. At least 57,000 residents were drinking water from the Widefield Aquifer, which is a paleochannel of Fountain Creek, in a renewable annual supply of nearly four billion gallons. During 2013-2014, as part of regular EPA testing done under the Unregulated Contaminant Monitoring Rule, the EPA’s Office of Science and Technology collected surface and groundwater samples from various areas of Fountain Creek and Sand Creek.

Solid phase extraction followed by high pressure liquid chromatography tandem mass spectrometry pinpointed the examination of ten separate PFAS compounds of differing lengths and makeups. The data was compiled using ArcGIS software to indicate concentrations along the paths on surface water. This initial study produced conclusions that showed contamination in every area that was sampled, the contamination exceeded the EPA’s advisory of 70 ppt being as high as 320 ppt, and that one of the local United States Air Force (USAF) bases was likely responsible for the contamination. It’s an Air Force base I know well.

Peterson Air Force Base, like other airstrips and airports and institutions throughout the world, has conducted firefighting training for its airmen using aqueous film forming foams since the 1970s. For decades the foam seeped into the Widefield Aquifer. In addition to that, base leaders admitted to disposing of foam-contaminated wastewater directly into the sewers in Colorado Springs three times a year. A report released by the Air Force clearly downplayed their responsibility for this contamination, but they did admit to it.

While the ultimate source of the Widefield Aquifer’s contamination may never be determined, just as the contamination might ever be fully removed, Air Force officials immediately began discussions with local congressional delegates, county commissioners, city staffers, and representatives of environmental agencies plus regional water districts. The Air Force committed to a five-year plan in providing alternative drinking water and funding installations for water treatment. Still, local and state officials have clearly indicated that even the proposed $4.3 million would not be enough to restore the damage done. To this day residents surrounding the Widefield Aquifer don’t trust that the water that comes from the taps in their homes is safe.

New watchdogs emerge

As of July 2017, the United States Air Force no longer uses AFFFs (aqueous film forming foams) as part of an internal mitigation plan. In April 2018 the USAF announced plans for delivering clean water to the impacted residents outlining the installation of filtration systems and purchasing 235 million gallons of drinkable water. Investigations continue in and around Peterson while local and state environmental scientists establish standards to limit contamination of the aquifer to 70 ppt. Water officials and advocates from the towns of Fountain, Security and Widefield continue their efforts in exposing and preventing further water contamination. Their sights are upriver directly at the Martin Drake Plant where its residual coal combines with surface runoff flowing downhill right into Fountain Creek. Also, in downtown Colorado Springs is Colorado College (CC), whose students and faculty are on the front lines of creating a sustainable future. CC’s chemistry students and faculty collaborators are working on an intensive curriculum of analyzing and eventually predicting contamination from surface water flow. All involved have established direct communication and contacts with different officials of the EPA.

The EPA gathered for a conference in Fountain, CO on February 14, 2019 for discourse on the contamination there and across the country. EPA regional administrator Doug Benevento and senior counsel to the administrator Peter Wright were present. One thing communities have been demanding is an enforceable standard, known as a maximum contaminant level, for drinking water. Benevento and Wright stated that the Safe Drinking Water Act requires the EPA to gather this data, but they must go through legal steps in this as well as recommendations for treatment. PFOAs and PFOSs are planned to be first for detection with steps in place by the end of the year and will begin regulating PFASs as dangerous chemicals. Furthermore, the eight examples of contamination, which were given direct orders from the EPA, will provide information and cleanup recommendations for maximum containment levels in drinking water plus establishing timelines for future purification efforts.

If our communities are going to have any semblance of normalcy in recovering from such disaster, then it is the communities who need to be directly involved. This sentiment is mirrored directly by Cornell Long of the Air Force’s Civil Engineer Center, “Thanks to our strong partnership with Fountain, Security and Widefield, these agreements will help us protect those communities as we move forward.” The more we know, the more we can prevent things like this from happening again, even if we can’t undo the damage that has already been done.

 

Ryan Nelson has profound loving respect for the Earth learning from invaluable conservational wisdom and traditions for over 25 years. Ryan grasped the importance of activism as a lead volunteer citizen advocate in his community. Now he works internationally empowering others in their own contributions enacting environmental and social justice. 

Science Network Voices gives Equation readers access to the depth of expertise and broad perspective on current issues that our Science Network members bring to UCS. The views expressed in Science Network posts are those of the author alone.

Photo: FEMA

Three Times EPA Administrator Wheeler Failed His Science Advisors This Week

Photo: Genna Reed

I told E&E News before this week’s Science Advisory Board (SAB) meeting that my concern was that Administrator Wheeler was using the board “as a box he needs to check off” on his path to deregulation. He called out my quote in his statement to the SAB on Tuesday morning and refuted the underlying assumption that he didn’t value his science advisors. I didn’t have to wait long before the proceedings of the meeting proved my very point and illustrated exactly how little Administrator Wheeler cares about the scientific underpinnings of regulations, the opinions of his own scientists and science advisors, or even in getting basic scientific facts correct. Here are just a few anecdotes from this week’s SAB meeting that made this clear:

“The devil’s in the details and we don’t have any of the details”

The very first matter of business for the SAB was to hear from the EPA about its restricted science rule. Remember, the SAB was not informed about this policy until it was proposed and went to public comment. At the last SAB meeting in May 2018, the committee voted in favor of asking former Administrator Pruitt to charge them with reviewing the policy. They sent an official letter in June 2018 and then waited for a response. EPA responded a whopping 10 months later in April. I mean, I had a baby in the amount of time it took for the EPA respond to its own science advisors. Not only was the response late, but Wheeler asked only for input on a very narrow piece of the rule–how the agency will deal with access to confidential business information and personally identifiable information).

Over forty members of the EPA’s Science Advisory Board deliberated this week to decide which EPA actions merit review. They voted to take a full look at the agency’s restricted science proposed rule, even though Administrator Wheeler only asked for their feedback on a narrow slice.

Now, as the agency intends to get this politically-hatched rule out the door by the end of 2019, the SAB still hasn’t responded to the SAB’s questions it sent last month. After much discussion about how the agency has given them no information about the rule and answered none of their questions, yet it has the potential to impact public health science in a major way. There was also much consternation from the committee about the fact that at this point, any contributions they make to the rule will come too late to meaningfully inform it. In the end the SAB almost unanimously voted to do a full review of the rule, which the chair Michael Honeycutt aims to get done before the fall. A quick side note on this is that the people that raised their hands when asked who had enough time to help write the first draft of a full review over the summer were mostly affiliated with industry and consulting firms, whose involvement in these matters demands scrutiny anyway.

In his opening statement, Administrator Wheeler defended the agency’s so-called transparency rule by pointing to the “safeguard” is that the Administrator could allow studies to be used even without making the data public on a case by case basis to  “ensure that studies beneficial to public health won’t be ignored.” But as we’ve explained before, the fact that this is even a part of the rule undermines its entire raison d’etre and shows exactly how arbitrary it is. Administrator Wheeler may say he wants SAB feedback on this rule, but it’s abundantly clear that he doesn’t really want scientific input because it would result in a grand takedown of this mess of a policy.

Attempt to fix SAB engagement process misses the mark

Administrator Wheeler told the SAB Wednesday morning, “Today we are beginning the transition to a new process. It’s no secret that the process was broken, and was not beneficial to the EPA, the board, or the public we all serve.” He harped on this theme quite a lot, later saying, “I’m glad to be here to lay out a new direction for how EPA interacts with and uses the SAB,” he said. “I will be the first to admit we have not utilized you the way that we should. We can and we will do better.”

After all of this lead-up, I expected something much better thought-out than what the agency presented the SAB with. It seems that the “interim process” would notify the SAB of agency actions “closer to” when they are published in the federal register. The agency then gave no further details on what “closer to” meant and whether it would be in the spirit of the law governing SAB. The lack of information in the presentation made it clear that Wheeler felt he needed to make SAB feel as if it was being included, even if the inclusion is all for show. A box checked.

Changing best practices of term lengths and conflicts of interest has done noticeable damage

If Wheeler truly believed that “science is the foundation for everything the agency does,” as he said in his statement, and wanted an independent, diverse, and expert SAB, he would have rolled back former Administrator Pruitt’s nonsensical directive that declared EPA grants a conflict of interest so egregious that it would disqualify scientists from serving on the board. UCS and more than 20 other organizations directly asked Wheeler to reverse this ridiculous ban, but he pressed onward. What this directive and changes to term lengths on this committee has done is reduce the institutional knowledge significantly so that only a few veterans know how SAB’s process works and everyone else is flying blind. By the time everyone figures out what to do it’ll be too late to get anything done, thus rendering the SAB nearly useless. This, of course, is exactly what this administration wants from its science advisors because if the science of many of the deregulatory and anti-science actions taken by this EPA was checked by independent scientists, it wouldn’t pass the sniff test.

What’s the path forward?

While it was encouraging to see the SAB members agree to take on many important scientific issues within the EPA’s deregulatory agenda, there’s nothing in Wheeler’s former actions to give me faith that that his rhetoric about weighing the SAB’s feedback and valuing science is anything more than talk. As he continues to further undermine the science advice process at the agency, the integrity of the SAB is at stake. To find out more about what happened at the meeting this week, check out my twitter threads from Wednesday and Thursday.

Bury Myers’ NOAA Nomination

Photo: C-SPAN

We became scientists to make discoveries and explore the unknown, not to wonder why science is rife with sexual harassment and discrimination. But that is not how our paths have gone. One of us (Dr. Willenbring) survived severe sexual harassment at a remote field station in Antarctica, which only recently resulted in the firing of the perpetrator. The other (Dr. Freitag) is a NOAA contractor who has watched how handling of sexual harassment cases can make or break a career in science.

We knew from our own experience that sexual harassment in the scientific fields is all too common. And so we were appalled, but not surprised to learn that AccuWeather—led by the President’s pick to lead the National Oceanic and Atmospheric Administration (NOAA), Barry Myers—agreed to pay $290,000 to 35 women as part of a settlement after a federal oversight agency found the company subjected female employees to sexual harassment and a hostile work environment. We also were not surprised that AccuWeather denied any knowledge of harassing activity, declined on-site access to investigators, and objected to any expansion of the investigation. And sadly, we were particularly unsurprised at the original 2016 complaint by a former AccuWeather employee alleged that she was, among other things, subjected to a hostile work environment and ultimately terminated due to her sexual orientation.

But despite our hard experience, we were surprised, shocked, and disgusted by the sheer extent of the harassment that occurred while Myers was CEO of AccuWeather, which was detailed in a federal report that became public earlier this month. The Office of Federal Contract Compliance (OFCCP) found, “Over two dozen witnesses spanning many different departments and in positions ranging from administrative support to senior management described unlawful sexual harassment that occurred at the company. This sexual harassment was so severe and pervasive, that some female employees resigned.” The investigation confirmed that AccuWeather was indeed aware of the sexual harassment but took no action to correct the unlawful activity.

At the same time that women at AccuWeather were being subjected to this pervasive harassment, so were women scientists, observers and contractors at NOAA. After several came forward to alert Congressional leaders to a system that had failed to protect them, Congress passed legislation to require the agency to develop a comprehensive policy on sexual assault and harassment prevention and response. NOAA complied with that requirement in February 2018.

NOAA’s reforms are working. We have seen them play out in practice and are cautiously optimistic that progress is being achieved. But those steps forward are still incremental enough to be undermined and will only be as strong as the leadership of the agency enforcing them. Myers claimed to be unaware of rampant and pervasive sexual harassment in a company of only about 500 office employees, How are we to have any confidence that he will have the capacity to ensure that an agency with 11,000 employees and contractors, many of whom are at sea and in remote locations, is aggressively enforcing an anti-harassment policy? As we both know all too well, serial harassers thrive in isolate environments where their victims have little recourse.

Myers has already made clear how he views such matters. When asked by the Senate during his confirmation process if “any business where he served as an officer had ever been involved as a party in an administrative proceeding, criminal proceeding, or civil litigation,” he responded that the company has been involved in “routine civil and administrative actions, such as (1) contracts disputes; (2) employee claims for unemployment compensation, EEOC matters, workers compensation, and OFCCP compliance; and (3) other personnel matters.” In other words, he views a settlement of pervasive sexual harassment in his own company, and financial payouts to at least 39 women who were subject to that harassment, as “routine.”

The women and men of NOAA, and of the ocean science community, deserve better than for gross sexual harassment and a hostile workplace to be considered routine. The nation’s premier ocean science agencies cannot and should not be led by anyone who does not understand that. The environmental threats facing our ocean today can only be addressed by the best scientists and subject matter experts in the world – and they should be led by someone committed to protect them. Barry Myers has shown he is not up to the task. We urge the Senate to reject his nomination.

 

Dr. Jane Willenbring is an Associate Professor at the Institution of Oceanography at UC San Diego, and Dr. Amy Freitag is a contract social scientist for NOAA.

Science Network Voices gives Equation readers access to the depth of expertise and broad perspective on current issues that our Science Network members bring to UCS. The views expressed in Science Network posts are those of the author alone.

Photo: C-SPAN

Wheeler’s Breathtaking Ignorance of Science, in One Comment

EPA Administrator Andrew Wheeler speaks at the EPA Science Advisory Board meeting on June 5, 2019 Photo: Gretchen Goldman

Yesterday at the EPA’s Science Advisory Board meeting, EPA Administrator Andrew Wheeler made comments on the agency’s proposed Restricting Science Rule that raised eyebrows for anyone who understands the basics of health studies. In his defense of the rule (which the scientific community agrees will severely hamstring the agency’s ability to rely on the best available science in its decision-making), Wheeler asserted that the EPA should be more like the FDA in its data transparency. The FDA uses double-blind studies and the EPA should be taking that approach, he suggested. Um, what?

To understand exactly how misguided this statement is, let’s take it from the top.

Dear Administrator Wheeler, this is what a double-blind study is

Double-blind studies involve study designs where both researchers and study subjects don’t know which subjects are given the placebo versus the treatment. These studies are a great way that researchers can reduce bias in scientific studies since those involved in reporting and collecting data won’t be influenced by knowledge of a potential effect. These study designs are especially useful in clinical trial research for new drugs, where scientists are interested in the efficacy of a drug, the presence of side effects, and other health outcomes.

The EPA and FDA study fundamentally different things

What would a double-blind study even mean in the EPA context? Your guess is as good as mine.

Here’s the problem: There is a fundamental reason that the EPA is different than the FDA. The EPA is studying environmental contaminants, i.e. pollutants that are out in the world. As a result, we have to rely on observational data of people living their lives in the world, with all the variability in pollution exposure that comes with that. We cannot control who is and isn’t exposed to pollution if we want to study populations. There are of course natural experiments that scientists can learn from but as I explain in a recent piece in Science, it is not possible or ethical for scientists to expose groups of people to harmful levels of pollution—something that would be required if we wanted to attempt a double-blind study. This is very different than the FDA context where researchers in clinical trials have a level of control over which study subjects are provided drugs.

Air pollution studies with Scuba gear?

But let’s entertain Administrator Wheeler’s idea, shall we? If we wanted to design a double-blind study on an EPA issue like air pollution, here’s what that would look like. You would need groups of people who are and aren’t exposed to harmful levels of air pollution. But to make it double-blind, both those people and the researchers conducting the study would need to not know whether they were breathing clean or dirty air (until after the data was collected). To do this, the participants can’t breath the ambient air because we wouldn’t be able to control the pollution level of the environment, i.e. it would mess up the study.

Thus, a double-blind EPA air pollution study would need to involve something like study subjects living their lives in scuba gear, where neither they nor the scientists studying them would know whether their scuba tank contained clean or contaminated air.

It is very easy to see how this is completely unworkable. Does Administrator Wheeler need a crash course in study design?

The FDA is not a poster child for the transparency Wheeler claims to want

Administrator Wheeler had complimentary remarks for FDA disclosure of scientific data in its decision-making. This is a head-scratcher for anyone who follows FDA decision-making.

The FDA is not always forthcoming in disclosing detailed information about its decisions on drug approvals, food additives, and other agency regulatory actions.While the FDA has made many improvements in process, leadership, and transparency, when it comes to drug review and decisions, information disclosure is still lacking. For other products like medical devices, the standard is less rigorous, and primary data is often not publicly available. Also of note, even FDA advisory committee members might only see summary reports from companies and FDA reviews, not the raw data itself. Finally, label changes and safety alerts may or may not be based on publicly available data.

Importantly, the FDA is certainly not following the extreme requirements in the EPA Restricting Science Rule. Like EPA, the FDA handles much confidential business information as well as personally identifying information. It is true that some studies involving this kind of information are released publicly in ways that protect the sensitive information. For example, by statute, large pivotal clinical trials are required for companies seeking approval for new drugs. When drugs are approved, the studies the FDA relied on are released publicly and more information is now becoming available through Clinicaltrials.gov. The FDA is not, however, releasing raw data in the way that the EPA Restricting Science Rule suggests.  This isn’t the model of disclosure that Administrator Wheeler claims to be aspiring toward.

Administrator Wheeler’s comments prove EPA desperately needs science advice

In conclusion, Administrator Wheeler’s comments suggesting that the EPA should mimic FDA’s use of double-blind studies makes zero sense.  Its almost as if he is in need of science advice from experts. The EPA Science Advisory Board could provide such expertise, if only the EPA will let them.

Thankfully, the SAB voted yesterday afternoon to fully consider the EPA Restricting Science Rule in addition to providing individual comments in a near-term consultation. If the administration makes good on its promise to release the final rule by the end of the calendar year, then the SAB advice would come later, but regardless of the timing these are issues where the EPA desperately needs science advice and the SAB must step up.

 

Photo: Gretchen Goldman

Understanding the New Restrictions on Fetal Tissue Research, and Attacks on the Scientists Who Use It

An intern doing scientific research in a US Navy laboratory. Photo: John F. Williams, US Navy/CC BY 2.0, Flickr

Health and Human Services Secretary Alex Azar has announced new restrictions on the use of fetal tissue in research. Fetal tissue research has led to profound progress in understanding and treating countless diseases and public health threats, including chicken pox, HIV, Alzheimer’s, Zika, and Parkinson’s disease.

If you want to understand the consequences of these new restrictions, the toxic and skewed discussion around the use of fetal tissue in research, and the negative consequences for individual scientists and their work, here are some good places to start.

First, critical fetal tissue research can be and is done ethically.

“There is strong evidence that scientific benefits come from fetal tissue research, [which] can be done with [an] ethical framework,” evangelical Christian and NIH Director Francis Collins said in late 2018. There is no evidence that fetal tissue procurement has any impact on abortion frequency.

Second, there is currently no substitute for fetal tissue in research.

According to Science, Dr. Collins also told reporters that “[T]here are certain areas where it’s hard to imagine that we would know what we know without the access to fetal tissue,” such as work on how the Zika virus infects brain cells and causes microcephaly in utero.

Mice models created with fetal tissue implants are considered the “gold standard” model organism for studying the long-term effects of a drug or the progression of a disease. These model organisms are essential for studying how HIV affects human immune cells. According to NIH Associate Director for Science Policy Carrie Wolinetz, there are no good alternatives currently available for developing human immune systems in mice without using human fetal tissue.

“The consensus is that there are certain things about fetal tissue that make [it] unique,” UC Davis Professor Paul Knoepfler told StatNews. “Certain experiments can really only be done on actual fetal tissue.”

Although the NIH is currently funding efforts to find alternatives to fetal tissue, NIH officials told Time Magazine that “the intent was never to cause research to stop,” and an HHS spokesperson told STAT that “by no means was [the review] meant to halt or ban or cease research.”

Equity Forward also has a helpful backgrounder on the importance of fetal tissue for understanding and combating disease and the political context that is driving the new restrictions.

Third, fetal tissue researchers have been under threat for years. 

Many researchers will not speak publicly about their work because they have received threats or fear threats. Most universities and university associations refuse to speak openly about this type of research because they are justifiably concerned about safety. Some scientists have resorted to hiring guards for their labs.

We live in a world where misinformation easily proliferates on contentious issues. In 2015, doctored videos that erroneously suggested Planned Parenthood was selling fetal tissue were used as justification for a congressional Select Committee on Infant Lives, a 15-month McCarthy-style boondoggle led by then-Representative Marsha Blackburn of Tennessee, who has since been elected to the US Senate.

Blackburn’s committee issued subpoenas to scientists around the country, including to medical doctor Eugene Gu. Dr. Gu’s fetal tissue research was designed to save the lives of infants who are born with non-functioning heart ventricles or missing kidneys. The committee sent armed US marshals to bang on his door to demand access to documents related to his work.

“I’m a very ordinary, small individual,” Dr. Gu told Science Friday. “I’m not a professor. I don’t have tenure at a university. When I was subpoenaed, I was an intern surgical resident basically making minimum wage. I couldn’t even afford an attorney.”

Dr. Gu was railroaded out of that surgical residency at Vanderbilt University (also in Tennessee) once he began speaking publicly about the harassment he faced. Dr. Gu told Science Friday that Vanderbilt attempted to cancel his appearance on the show.

Fourth, threats and restrictions slow down research.

As Emily Crockett wrote for Vox in 2016:

“Researchers have testified before the select panel that promising studies of diseases like multiple sclerosis have been delayed due to threats and political pressure.

That’s partly because those threats and political pressure are causing the supply of fetal tissue to dry up. Some abortion providers and tissue procurement companies have abandoned fetal tissue donation entirely — and not that many of them were even doing it in the first place.”

“The fetal tissue research subpoena, demanding the names of anyone remotely involved in the research not only in the procurement of the tissue, is a direct attack on the scientific enterprise,” wrote my former colleague Pallavi Phartiyal in 2016. “It interferes with the ability of scientists to advance research on debilitating diseases, utilizing the most useful methodologies and research materials. [It] has the potential of dissuading a whole generation of early career scientists from entering controversial [fields] if they feel that they’d need to defend their science every time there’s a member of Congress who doesn’t deem their scientific methods appropriate or finds their results disagreeable.”

Ultimately, a severely skewed representation of the ethics and benefits of fetal tissue research is depriving all of us from research that can literally save us and our loved ones from disease. This is both irresponsible and sad.

Photo: John F. Williams, US Navy/CC BY 2.0, Flickr

Put Them In, Coach: Why Sidelining the EPA’s Science Advisory Board Is a Disservice to Us All

Photo: sharply_done/iStockphoto

The EPA’s key scientific sounding board, the Science Advisory Board (SAB), will be holding its first full public meeting of 2019 this week. And as Administrator Wheeler’s EPA continues to roll back policies that were informed by science or devise new strategies to restrict the way that science is used in agency rulemakings, the committee formed to help review the agency’s science should have a very long to-do list.

But as we’ve noted before, the Trump administration has made it very clear across the board that incorporating independent science advice into its decisions isn’t a priority. This has been borne out in the agency failing to listen to its own scientists on regulatory decisions that affect public health, suspending or cancelling its own chemical assessments, and banning EPA-funded experts from advisory committees, which has significantly changed the composition of its advisors. While the SAB exists and has a full membership of over 40 individuals, Administrator Wheeler is now further attempting to strip the SAB of its responsibilities by narrowing its work to very specific pieces of problematic policy proposals (like restricted science) rather than charging its members with thorough reviews.

Why does this matter so much? Because the SAB serves an important role of checking the EPA’s science on a range of scientific issues—and that check can mean the difference between a policy that’s based on the best available science and one that’s based on the political whims of former coal and oil industry lobbyists now inhabiting powerful agency positions. Here are just a few examples of what could happen if this current SAB doesn’t have the chance to meaningfully weigh in on EPA’s policies on the table and political appointees continue to make decisions about the science that they have no business making.

  • Restricted Science: We already know the creation of this proposed rule, which would restrict the science used in public health policy, was a political maneuver first concocted by the tobacco industry and attempted many times legislatively in order to squash inconvenient science. If SAB continues to be cut out of this process, this policy could be issued without a single check on its scientific basis, on which a long list of scientific associations have come out in opposition. And this failure to charge SAB with reviewing the policy would set a concerning precedent that such policies don’t need to be rigorously reviewed by the scientific community. Allowing this rule to make its way as official agency policy would threaten public health science as we know it, erasing evidence of health harms caused by environmental pollutants because EPA isn’t allowed to use the science to protect us all.
  • Risk Assessment Guidelines: There have been several attempts to change the model used by EPA to evaluate risk of chemical exposure, including an interest from this administration (and industry) to remove the linear non-threshold model as the default assumption for contaminants. This model assumes that there’s no safe level of pollutants, whereas a threshold model assumes that there is a level below which exposure to a chemical is safe. The former is a more protective approach supported by the best available science and is the default assumption within the current cancer guidelines. If the SAB doesn’t have the opportunity to review changes to these guidelines, former American Chemistry Council employees now working inside EPA, like Nancy Beck, could write in industry’s wishlist of changes to these assessments to change the math used to analyze risks of chemicals, with the goal of making it more likely for the EPA to issue a finding that a chemical is safe, even when it’s not.
  • Cost Benefit Analysis: This administration has attempted to undermine the way in which EPA counts the ancillary benefits of regulations, including avoided particulate exposure in issuing clean air standards. Without SAB review, the agency could choose to ignore the science on the health benefits of avoiding pollutant exposure, changing the math so that the costs of creating important safeguards outweigh the benefits. This would be a great boon to the energy industry looking to continue business as usual, but would be a huge loss for anyone interested in breathing clean air. Alarmingly, such a move could have wide-ranging impacts on EPA’s ability to enact any new public health protection, since many EPA safeguards, from the mercury rule to the Clean Power Plan, rely on EPA’s ability to consider all relevant and quantifiable benefits in its rulemaking.
  • PFAS: The EPA’s PFAS action plan issued in February was light on the so-called action. Already, we are incredibly far behind in understanding the scope and scale of the contamination of these forever chemicals in our water, soil, and food. The agency needs to take swift action to protect us from further contamination and figure out how to clean up the mess made by manufacturers and users of this large class of chemicals. In order to act swiftly and in the best interest of the public, we need the smartest people in the room checking the agency’s decisions. Otherwise, we could be left with “action” determined appropriate and sufficient by people like David Dunlap, now leading the Office of Research and Development, who spent years working for Koch Industries, a parent company of PFAS-user companies like Georgia-Pacific.

While the aforementioned scenarios could play out even if SAB has the chance to review the policies in question, having a group of scientists publicly weigh in on these proposals is an accountability mechanism making it less likely that fringe scientific views find their way into final policy proposals. The bottom line is that the Science Advisory Board was created to serve as a check on the agency’s science. If there was ever a need for that check, it’s now.

I will be attending tomorrow’s meeting, providing a public comment, and tweeting the event from my handle, @gennareed.

Photo: sharply_done/iStockphoto

Let’s Stop Letting Minority Rule Give Us Science Fiction Abortion Laws

Photo: Elizabeth Greenwald/CC BY-SA 4.0 (Wikimedia)

Missouri is still set to become the first state in over 45 years to not offer abortion as a part of healthcare. Georgia, Alabama and Mississippi have recently joined other states in not only limiting access to abortion (relying on misinformation), but also challenging its constitutionality. This is the latest phase of an anti-abortion strategy based on pseudoscience, which began after 2010, when conservative forces swept into power in numerous state legislatures. Since then, hundreds of restrictions on abortion have been passed, ranging from extended waiting periods, insurance restrictions and restrictions on clinics and doctors, to these more recent bills that ban abortion as early as six weeks into a pregnancy.

Our arrival at this point, where public policies opposed overwhelmingly by medical experts as well as the majority of Americans might soon become law, shows how biased political institutions give way to extreme ideological forces untethered to scientific reasoning or evidence. A properly functioning democracy restrains such forces by relying on widely accessible information and institutions that give equal weight to public judgment. Abortion policy would probably be much different in the U.S. under institutions that actually respected political equality and majority rule.

Such extreme policies are unpopular in part because advocates peddle junk science and major medical organizations have been vocal in their opposition. The American Congress of Obstetricians and Gynecologists strongly opposes so-called fetal “heartbeat” (this language is medically inaccurate) legislation like that recently passed in Georgia and Alabama. They have also had to alert the public that “Claims regarding abortion ‘reversal’ treatment are not based on science and do not meet clinical standards” in response to bill language from states like Oklahoma, Arkansas, Idaho, South Dakota and Utah.

The science-defying bills don’t stop there. An Ohio bill including language about implanting ectopic pregnancies was “science fiction,” according to Daniel Grossman, OB/GYN and director of Advancing New Standards in Reproductive Health at the University of California at San Francisco. Gynecologist and women’s health advocate Dr. Jennifer Gunter refers to such bills as “medically illiterate.” Similarly, the American Medical Association has consistently opposed politicians trying to determine what is medically necessary treatment or shielding practitioners from withholding care for moral or religious objections. And as political scientist Alex Keena has argued, such “supply side” policies that seek to limit access to care are generally opposed by the medical community because they actually increase health risks for women and children.

And yet these bills pass. They pass, in part, because biased representation in these state legislatures amplifies the voting power of these extreme viewpoints. Consider the states that have passed the most restrictive legislation since 2011. The association between biased institutions and restrictive abortion policy can be evaluated using the partisan bias measure that indicates how gerrymandered state legislatures are. Negative values are biased in favor of Republicans, positive values biased in favor of Democrats. We don’t have adequate election data for state elections in Alabama and Mississippi to estimate partisan bias. However, their Congressional districts are among the most gerrymandered in the country. It is easy to see that most of the early abortion bans were passed in heavily gerrymandered legislatures.

Gerrymandering critic David Daley recently described how the early abortion bans in Georgia and Alabama would not have passed in their current form without the advantage of electoral bias. Both states have recently held elections that were basically tied statewide between the two major parties, but most state legislative seats are uncontested or uncompetitive, and Republicans hold large majorities in both legislatures. Those large majorities increase the legislative strength of the anti-abortion faction. Even in Louisiana, where an early abortion ban passed with overwhelming support that included a dozen Democrats, a less biased districting plan might have resulted in a slightly less extreme bill, with exceptions for rape or incest.

It’s also worth pointing out that the most disenfranchised groups stand to be the most affected by extreme anti-science reproductive health policies. Restrictive voting laws in Georgia, North Carolina and elsewhere systematically hurt Black voters both in practice and by design. And it is black women who may be affected the most by the abortion bans and other restrictions on reproductive healthcare. As journalist Samara Lynn points out, the facilities that provide abortions are also safe havens for women to receive prenatal care, sexual education, and pregnancy care. Closing of these facilities will disproportionately affect low-income black women and those in rural areas.

Women of color already face unacceptably high maternal mortality and infant death rates in the US, and barriers to voting don’t help. In addition to electoral bias in state legislatures and Congress, the Electoral College also contributed to this state of affairs. The latest wave of direct challenges to Roe v Wade, which secures the right to abortion into the 24th week of pregnancy, are aimed squarely at the two newest members of the Court, appointed by a president who lost the popular vote, justices Gorsuch and Kavanaugh. Even if the first early abortion ban is overturned by the Court, there are many headed their way.

Imagine what the debate over abortion policy would sound like if it worked through electoral institutions that treated each voice equally? The cause of electoral reform is not only about securing equal voting rights, as important as that is. It is also a cause for sound public policy, policy that can receive full public scrutiny and equal consideration in a competitive electoral environment. Scientifically sound reforms, like those included in the For the People Act, would contribute to an upgrade in our electoral infrastructure that gives equal voice to all. Automatic voter registration, easy access to ballots and early voting, independent redistricting commissions, full financial disclosure for campaign donors, and similar measures would correct the bias that is currently amplifying such extreme, unscientific views on abortion.

Everybody deserves to be heard on this important medical and moral discourse. But what we have now reflects the distorted discourse of a minority view amplified through the bias of our political institutions. For the life of our democracy, we need to correct these inequalities and ensure that voters have an equal voice.

Photo: Elizabeth Greenwald/CC BY-SA 4.0 (Wikimedia)

Court Records Reveal Plan to Use Census for Racial Discrimination

Photo: Quinn Dombrowski/Flickr

Just weeks before the Supreme Court will determine the constitutionality of placing a citizenship question on the 2020 Census, newly released documents from a federal trial demonstrate that Trump administration officials falsely testified about the Justice Department’s motives and justification for adding the question, a decision that has been roundly criticized by the nation’s leading scientific and civil rights organizations. The documents reveal that renowned and recently deceased redistricting expert Thomas Hofeller played a direct role in advocating for a Census citizenship question that would provide data needed to implement racially discriminatory gerrymanders using citizen-only redistricting populations.

This new evidence, together with the Trump Administration’s previous attacks on voting rights and misuse of election science, underscores the importance of the Supreme Court’s upcoming decisions on both the citizenship question and the constitutionality of partisan gerrymandering. It is increasingly evident that through the distortion of science, core institutions of American democracy are under direct attack, and that the Constitutional protection of equality under the law will erode in the absence of judicial oversight.

Hofeller was commissioned for an analysis in 2015 that showed how the Republican Party could design even more extreme gerrymanders using the citizen voting age population to create districts, rather than the total population. This question was the subject of a voting rights case that same year, where Texas officials argued before the Supreme Court that the Constitution required that voters, not persons, be counted for apportionment of election districts.

Hofeller’s study of Texas state legislative districts showed that citizen-only districts would require expanding the geography of heavily Latino, traditionally Democratic voting districts, which in turn would be “advantageous to Republicans and non-Hispanic whites.” But Hofeller concluded that “Without a question of citizenship included on the 2020 Decennial Census questionnaire, the use of citizen voting age population is functionally unworkable.”

Records show that Hofeller urged the Trump Administration to add the question, and that he worked directly with Mark Neuman, who then testified that using Census citizenship data was necessary to better enforce the Voting Rights Act and increase Latino political participation (despite the fact that VRA enforcement has never relied on Census citizenship data since it was passed in 1965).

That justification has been thoroughly discredited by election experts and several federal judges who have sided with scientific and civil rights groups seeking to stop the question from being added. Adding such a question, when adequate data is already available through the American Community Survey, would reduce the Census response rate, distort the results, and make it more difficult to enforce the Voting Rights Act.

The Court now has before it concrete evidence that the citizenship question addition is an effort to deploy racially discriminatory gerrymandering to gain political power. Several other studies support Hofeller’s claims that citizen-only districting would dilute Latino representation in Congress and state legislatures, and that substantial power would shift away from areas with more immigrants and people of color, to already over-represented areas with more non-Hispanic whites and older residents. Unfortunately, the Roberts Court does not have a great record of relying on clear evidence when it comes to protecting voting and civil rights: It has already weakened the Voting Rights Act in Shelby v Holderturned a blind eye to voter purging from registration lists in Husted v Randolph, and showed extraordinary deference to executive power, including the president’s religious hostilities, in Trump v Hawaii.

This is disheartening because when one considers the three aspects of elections that this new evidence touches on, the path to entrenched minority rule and further erosion of democracy is clear.

  • A citizenship question on the Census would itself result in more non-citizens and other immigrants not completing it, distorting the apportionment of seats to the House of Representatives and the allocation of millions in federal funds to states and localities;
  • While the Court has unanimously upheld the right of states to count all persons in redistricting, at least some of the Court’s conservatives lean in the direction of allowing citizen-only redistricting, which would enable further discrimination and distortion;
  • Without a clear ruling to restrain partisan gerrymandering, mapmakers will use such data to mask racial gerrymandering as “partisan politics” when in reality the two are increasingly inseparable.

If the Supreme Court is to uphold its constitutional obligation, it must apply the unanimously supported opinion that Ruth Bader Ginsburg crafted in that Texas apportionment case, where she stated“As the Framers of the Constitution and the Fourteenth Amendment comprehended, representatives serve all residents, not just those eligible or registered to vote.”

Indeed, the Fourteenth Amendment binds us to the principle of political equality, and the Decennial Census is the scientific instrument that allows us to achieve it, at least as far as political representation gets us there. The Court must not allow the Census to be weaponized as a tool for the distortion of political power. Along with the Voting Rights Act, it is arguably our best means of securing the integrity of our electoral systems and our status as a democracy.

Photo: Quinn Dombrowski/Flickr

Trump Administration Puts Offshore Oil Rig Workers’ Lives at Risk

Photo: mliu92/Flickr

The Trump administration is failing to consider scientific evidence in rolling back a rule intended to keep lives of offshore oil rig workers safe. These are the very workers that the Trump administration claims to care so much about. But evidence suggest that this rollback on worker safety has been a long time coming.

First, a study was halted

The first step to rolling back oil rig workers’ safety was the Trump administration canceling a National Academies of Sciences, Engineering, and Medicine (NASEM) study intended to investigate how to improve safety inspections of offshore oil rigs. While it is odd for any administration to cancel a study led by the country’s most prestigious scientific institution, it also was odd that this study was halted because the agency it was intended for asked for the study to be conducted…then made a U-turn and asked for the study to be halted.

In April 2010, BP’s Deepwater Horizon oil rig exploded and released 4 million barrels of oil into the Gulf of Mexico. The explosion killed 11 workers and the spill caused an estimated $8.8 billion in environmental damages. The Deepwater Horizon oil spill is considered the most damaging in U.S. history.

A 2016 report from the Government Accountability Office (GAO) sharply criticized the Interior Department’s offshore regulating body, the Bureau of Safety and Environmental Enforcement (BSEE), for conducting inspections that are still based on pre-Deepwater Horizon standards. The report stated, “The use of outdated investigative policies and procedures is a long-standing deficiency.” In response to this report, the BSEE requested a study by NASEM to determine the best inspection practices to help avoid another catastrophic accident like Deepwater Horizon. The study was requested in 2016, but progress on the study was immediately halted in 2017. No reason was offered as to why the study was canceled.

Then, the waivers came

The Obama administration implemented safety requirements for offshore oil rigs in 2016. In September 2018, the Trump administration released a proposal for rolling back many of those safety requirements (subscription required). Many assumed that the administration would be waiting for public comment and review processes before the rollback could take place, but this did not happen.

In 2019, Politico revealed that the Trump administration had issued nearly 1,700 waivers on the offshore safety rules to states. These waivers were largely to bypass rules related to blowout preventers – the last line of defense that ensures an uncontrolled oil spill doesn’t occur.

The finale – A rollback issued

And the final rollback of safety measures has been issued by the Trump administration, putting more lives and our environment at risk of another catastrophe like Deepwater Horizon. The Trump administration says that they can achieve the same level of safety for workers and our environment with the revisions. How does that even make sense? That’s like saying that I’ll achieve the same quality of brownies if I leave the sugar and chocolate out. It’s just never going to be true. Additionally, it’s worth noting that BSEE didn’t even conduct a risk analysis on the revised rule.

So why ignore scientific evidence, cancel an investigation by the most prestigious scientific institution in our country on how to better safety standards, issue waivers quietly, and roll back protections for workers? You may have guessed it already – money.

The Interior Department estimates that the rollback will save industry more than $1.5 billion over 10 years. According to the Project on Government Oversight (POGO), “Most of the savings from the final rule—$919 million of it—is attributed to requiring less frequent testing of safety systems known as blowout preventers, which are the last line of defense against runaway wells.” Blowout preventers – the safety mechanism widely regarded to be the culprit of the Deepwater Horizon spill.

The majority of comments submitted were in opposition to the proposed rule and many of its major proposals that rollback offshore oil rig workers’ safety. Yet, the administration didn’t listen to the public.

It’s ironic, don’t you think?

The Deepwater Horizon spill cost BP an estimated $67 billion in losses from the disaster. Yet, the Trump administration is willing to put the safety, the lives, of offshore oil rig workers on the line for $1.5 billion? I’m not a mathematician, but it seems like it’s cheaper in the long run to implement the safety practices that don’t result in $67 billion in losses. But, like I said, I’m not a mathematician. Also, making sure people don’t die is pretty good, too.

These are lives that the Trump administration claims to care about dearly. Yet, we have seen this administration plan to decimate protections for these workers since day one. There has been a coordinated plan that makes it clear – the Trump administration never cared one bit about the safety of these workers. It seems that the administration has their eyes on something else. Let’s just hope more lives aren’t lost on this irony.

Photo: mliu92/Flickr

Managing the Work: Reflections on a year of science advocacy from the 2018 UCS Science and Democracy Fellows (Part 2)

Science and Democracy Fellows with trainers and fellows from COMPASS.

This is the second part of our series reflecting on the 2018 UCS Science and Democracy Fellowship. You can read the first part here

Learning to be an effective science advocate isn’t just about developing advocacy skills and learning about science policy. It’s also learning about how you make advocacy a sustainable part of your life’s work. It’s easy to get frustrated, burnt out, and want to give up when change isn’t coming fast enough. Strategies for approaching advocacy in a thoughtful way can lead to more long-term gains and also make it feel less overwhelming.

4. Pace yourself! Time management and self care are important.

5. Remain detached from the outcome. Celebrate little successes.

4. Pace yourself! Time management and self care are important.

Emily – Remember that “the work” is the work of a lifetime – while it may seem as if there is no time to wait, “there will be time, there will be time, there will be time” (to quote T.S. Eliot). Pace yourself! The timeline of the fellowship was not the timeline of the issues at hand, but was a start that led to meaningful and continued engagement, rather than a finite experience.

Tim – Emily brings up a great point that, for me, gets lost sometimes in this age of partisan political turmoil. I would add that focusing on what can be done rather than what could happen and being mindful of the moment allows the opportunity to take advantage of new possibilities that happen unexpectedly.  As an example, I was at a get-out-the-vote event and was able to network with other groups that were also there for a similar event that day. We took opposite sides of the student fairway and engaged more students together than we would have been if it had just been my group.

Adrienne – As Tim highlighted, look to build bridges with those already engaged in community building. No need to reinvent the wheel! Instead, think about how together you can do more.

Lindsay – It was really beneficial for me to have a timeline when planning my events, I am motivated by approaching deadlines. However I had a few very significant life changes last year that led to a shift in prioritization of my commitments. The timelines were essential, but so was extending grace to myself and realizing I’m just getting started, these are tools for a greater shift in engagement, not just tools to complete the Fellowship.

Shri – Be gentle with yourself. It’s okay to share your struggles with your cohort. None of us are alone in these struggles.

Trainer Pamela Chang leads a group exercise at the fellows summit.

5. Remain detached from the outcome. Celebrate little successes.

Adrienne: Grassroots community advocacy work is a challenging long-game and successes didn’t always come in the form I expected during my fellowship. Thankfully, in times of frustration my UCS fellows reminded me to detach from the original goal and attach to each little success — a room full of students and community members at a LTE workshop (regardless if we didn’t get anything published), walking a few new voters to polls, or encouraging one more student to regularly call their representatives. I believe there is a gradual ladder of engagement and getting any individual to step up one rung is a success. Even just passively exposing constituents to a dialogue of science advocacy gives me hope that one day others will walk up the ladder towards more active advocacy.

Emily – As Fellows, our goal was to open a door into political engagement and advocacy for others who were new to the work, or for those who were seeking to collaborate. Who can tell where an opened door will lead at the start? Often, unexpected opportunities became available, and we learned to follow where they lead. Personally, I grappled with some opportunities becoming dead ends, but I learned that did not mean THE end of my work or goal. I just had to keep searching.

Lindsay –  Even if your actions don’t yield the results you were hoping for, your involvement is still valuable. Maybe it taught you an essential lesson to carry into your next action or prompted important dialogue within a partnering organization. I worked to increase indigenous attendance at a partner organization’s statewide event. While we didn’t get the attendance we had hoped for, we learned from the process and the partner organization realized its important to their membership that they are intentional about organizing inclusive events.

Shri – Celebrate connections made and recognize that it’s okay to go with the flow. Things become much less overwhelming when in good company.

Tim – I had to keep reminding myself that a healthy democratic process involves many differing opinions from people who must come together with compromise and common ground.  Engaging in a partisan way can make others feel excluded and or minimized.

Advocacy as a life-long pursuit

We started as neophytes who came to understand that advocacy is a continual learning process. While our Fellowship has ended, our advocacy and teamwork has not. In struggling and striving to enact positive change we developed powerful bonds with one another. Mutual appreciation, support, respect, and willingness to lift each other up after inevitable mistakes, let-downs, and self-perceived failures facilitated the formation of vibrant inter-connections. This sense of belonging to a purpose and movement greater than ourselves is priceless. We discovered that our individual experiences were not separate from other Fellows’ experiences, but rather like threads in a tapestry they provide variation in texture and color, supporting and complementing the other strands that make up our fabric.

 

 

Shri A. Verrill grew up in the Western foothills of Maine and holds a M.S. in Biology from the University of Southern Maine where she gained expertise in wetland science focusing on coastal salt marsh, estuarine ecology. Shri is currently a Habitat Restoration Project Manager with the Downeast Salmon Federation, and has lobbied both at the State and Federal level with the Maine Chapter of the Sierra Club, the Natural Resources Council of Maine and with the Downeast Science Watchdogs.  

 

Lindsay Wancour works with Swan Valley Connections, a collaborative conservation and education non-profit, as their Field Program Coordinator. Originally from Michigan, Lindsay moved to Montana after graduating from Michigan State University and served in Americorps’ Montana Conservation Corps. She then went on to complete her M.S. in Environmental Science from University of Montana, focusing on community engagement in watershed health. After completing her UCS fellowship, she started a UCS Western Montana Local Team and has continued her work in advocacy with her newly formed team.

 

Adrienne Keller is a PhD student in the Evolution, Ecology and Behavior program in the Department of Biology at Indiana University, where she studies forest carbon and nutrient cycling. Adrienne holds an M.S. in Resource Conservation from the University of Montana and a B.A. in Biology and Geography from Macalester College (St. Paul, MN). In addition to her research in ecosystem ecology, Adrienne is an active member of the newly formed, grassroots organization Concerned Scientists @ IU.

 

Tim Rafalski is a Ph.D. candidate in the Computer Science department at the University of Nevada Las Vegas. He works under Dr. Andreas Stefik conducting empirical studies—designing, running, and implementing programming language experiments—to validate scientific computing design and organization. Outside of the lab, Tim is a math and science tutor for students in elementary school through college, and he helps organize and participate in community elevating educational events.

 

Emily Piontek is seeking her master’s degree in Human Dimensions of Natural Resource Management at the University of Missouri – Columbia. She believes that climate solutions and common-pool-resource protections require a combination of political action and the fostering of place-based environmental values in our communities. In her classes and as a research assistant, she studies the relationship between human behavior and natural resources.

 

Science Network Voices gives Equation readers access to the depth of expertise and broad perspective on current issues that our Science Network members bring to UCS. The views expressed in Science Network posts are those of the author alone.

Fellows workshop ideas in small groups.

Drops, Ripples, Waves: Reflections on a year of science advocacy from the 2018 UCS Science and Democracy Fellows (Part 1)

In response to the increasing political attacks on science, in 2018 the Union of Concerned Scientists launched the Science and Democracy Fellowship to support scientists in becoming local advocacy leaders. We were selected for the inaugural six-month program to mobilize our local communities, in partnership with UCS, in confronting federal attacks on science.

Who are we, and what did we do?

We are five early- and mid-career scientists from Indiana (Adrienne), Maine (Shri), Missouri (Emily), Montana (Lindsay), and Nevada (Tim) who organized actions and events within our respective local communities to stand up for science-based policies at the local and federal level. Some common themes emerged as we reflected on our collective lessons-learned, which we’ll share in a two-part blog series.

  1. Being a constituent gives you the right to engage. Start with one small step; each action you take will empower you to do more.
  2. Develop inclusive relationships.
  3. Be explicit in your ask and prepare to be adaptive to the response.

We continue to integrate these ideas in our advocacy and invite you to listen to our experiences in our own voices below.

1. Being a constituent gives you the right to engage. Start with one small step; each action you take will empower you to do more.

Tim – Advocacy doesn’t have to be complicated or be some huge project. Little efforts, like letters to the editor (LTEs), are small acts of advocacy and achieve small action goals when people don’t have much time or experience.  Having success on these smaller projects builds momentum that can provide better support for larger projects. I found that once my group had done a smaller effort, it was easier to focus on a bigger goal.

Adrienne – I agree, Tim. Leading with small examples makes the bar lower for others to get engaged. For example, if you are trying to get others to call their congresspeople, are you also calling every week? Even better, can you get someone else to make a call with you during your coffee break? LTEs can be short, but should be timely which can be challenging to accomplish as a solo act. Can you get one other person to join you in writing a letter, getting them engaged, splitting the work, and enhancing inclusivity?

Shri – The template for writing LTEs provided by UCS made it so easy! Once I had a local paper in my hand it took about 5 minutes of skimming to find an article I could reply to. Then it was as simple as plugging in sentences according to the template. The biggest barrier during our LTE party was the fact that none of us actually read the paper! We realized that this was an important way to be connected to the local community.  Writing an LTE is a great place to start. If I were to do it over again I would get a bunch of people in the same room with a stack of papers. We could easily go through the whole process of skimming the paper, finding the article and writing the letter in an hour.

Emily – Remember that newspapers are struggling with shrinking budgets! Many editors and  reporters will be happy that you’re offering your own perspective in the form of an op-ed or LTE, and they don’t have to use vital resources to track a story down themselves.

Lindsay – It’s easy to make excuses that prevent you from engaging. It’s just as easy to engage. An LTE is a mere 150 words, we all have 150 words to share on a topic we care about! I put off writing an LTE for months, when I finally did it, it was a breeze. Having community members and representatives reach out to me on social media in response was validating, and made me feel silly for putting off such a simple, effective task for so long.  

  2. Develop inclusive relationships.

Shri: Build inclusive relationships, make connections, use your network. Consider who is at the table, be grateful to those who show up, and make the effort to reach out to the people who are not at the table, whose voices are under represented. When you prepare to take an action, take a step back and identify who is impacted, then make moves to raise their voices. This could mean putting your efforts on hold to support what they already have going on. Be intentionally inclusive and proactive about addressing equality. It’s helpful to make meaningful connections by keeping the ask low pressure, simple and sincere.

Tim – I think of this one as a network circle. A journey around my network circle includes members of science advocacy groups, such as the Nevada watchdogs, the communities who have a specific science supported goal, and the audience or recipient of the action or advocacy goal. I agree with Shri and the other fellows that inclusion is essential to success. This inclusion was a key to identifying important scientific question topics that we submitted to our Senate debate.

Emily – As Tim has said, a “network circle” is a great visual that really speaks to the core importance of advocacy communities. I envisioned a “ripple” when thinking about the network I hoped to build. As in, how far do my advocacy concerns resonate outside my immediate circle? Also, in thinking about diversity equity inclusion (DEI), it’s important to ask, “Who am I not seeing ‘at the table’? Who is missing, and why?” I’m learning not to assume that the people who show up to your actions are the only ones interested. Many others may be constrained by time, resources, or a feeling they don’t belong. But the strongest network circle is going to be the one that captures as many voices as possible.

LindsayDiversity, equity, and inclusion were at the forefront of all of my planning but I struggled to incorporate it in an effective way in my actions. This struggle led me to organize a discussion that was open to the community on the challenges and importance of creating inclusive spaces. My takeaway is that this is not always an easy task, but it is a task worth every ounce of energy. Be willing to learn in public spaces and learn from your neighbors.

3. Be explicit in your ask and prepare to be adaptive to the response.

Tim – In my experience, people have limited time but do want to get involved. That being said the more specific tasks or asks that you present, the greater the chance for involvement or success. I had two contrasting group events and saw a noticeable difference in engagement when I was able to drill down to a single or few items for each person to accomplish in a project rather than an open format that allowed individuals to work out the details of a larger project.

Shri – Use examples to show what a finished piece looks like, i.e., an LTE or letter to one’s representatives.

Emily – After you’ve made a specific ask, as Shri and Tim mention, it might be time to “adapt to the response”. Remember that your advocacy goals versus the goals of the groups or individuals you are working with may differ, but be prepared to lean into that difference. A community member who’s been engaged for longer than you has insider information as well as needs and constraints that are important to heed.

Each of us joined the Fellowship as a single drop, so to speak, but in joining our advocacy efforts with each other, and in engaging with members of our local communities, we made ripples in advancing science and policy advocacy in our respective states. Over time, these advocacy ripples became waves and influenced science and policy at a higher level. Just remember – we started as drops. Now, that little drop could be YOU.

Stay tuned for the second part of our series where we focus on how to make organizing and advocacy a sustainable endeavor–even while juggling work, school, and life.

 

 

Shri A. Verrill grew up in the Western foothills of Maine and holds a M.S. in Biology from the University of Southern Maine where she gained expertise in wetland science focusing on coastal salt marsh, estuarine ecology. Shri is currently a Habitat Restoration Project Manager with the Downeast Salmon Federation, and has lobbied both at the State and Federal level with the Maine Chapter of the Sierra Club, the Natural Resources Council of Maine and with the Downeast Science Watchdogs.  

 

Lindsay Wancour works with Swan Valley Connections, a collaborative conservation and education non-profit, as their Field Program Coordinator. Originally from Michigan, Lindsay moved to Montana after graduating from Michigan State University and served in Americorps’ Montana Conservation Corps. She then went on to complete her M.S. in Environmental Science from University of Montana, focusing on community engagement in watershed health. After completing her UCS fellowship, she started a UCS Western Montana Local Team and has continued her work in advocacy with her newly formed team.

 

Adrienne Keller is a PhD student in the Evolution, Ecology and Behavior program in the Department of Biology at Indiana University, where she studies forest carbon and nutrient cycling. Adrienne holds an M.S. in Resource Conservation from the University of Montana and a B.A. in Biology and Geography from Macalester College (St. Paul, MN). In addition to her research in ecosystem ecology, Adrienne is an active member of the newly formed, grassroots organization Concerned Scientists @ IU.

 

Tim Rafalski is a Ph.D. candidate in the Computer Science department at the University of Nevada Las Vegas. He works under Dr. Andreas Stefik conducting empirical studies—designing, running, and implementing programming language experiments—to validate scientific computing design and organization. Outside of the lab, Tim is a math and science tutor for students in elementary school through college, and he helps organize and participate in community elevating educational events.

 

Emily Piontek is seeking her master’s degree in Human Dimensions of Natural Resource Management at the University of Missouri – Columbia. She believes that climate solutions and common-pool-resource protections require a combination of political action and the fostering of place-based environmental values in our communities. In her classes and as a research assistant, she studies the relationship between human behavior and natural resources.

 

Science Network Voices gives Equation readers access to the depth of expertise and broad perspective on current issues that our Science Network members bring to UCS. The views expressed in Science Network posts are those of the author alone.

Children’s Health Research Centers Protect Our Kids. The EPA Just Defunded Them.

Photo: EPA

Almost 19 years ago, the Environmental Protection Agency (EPA) entered into a partnership with the National Institute for Environmental Health Sciences (NIEHS) to invest in children’s health. The EPA lauded this history just last October, noting the immeasurable value and singular focus of improving the health of children across every community. The partnership established a joint program to competitively fund community-based Children’s Centers across the country—centers where teams of researchers and child health experts come together to study and reduce environmental health risks to children today and into the future. Research on toxic substances linked to illnesses such as asthma, cancer, autism, and attention deficit hyperactivity disorder (ADHD) that can rob children and their families of the many joys of childhood and impact the child for a lifetime.

Over its history, the partnership program has awarded 46 grants totaling over $300 million to Children’s Environmental Health and Disease Prevention Research Centers from coast to coast (see map of grantees over time, pp. 10-11). And the research has been prolific (the EPA’s word, not mine), with more than 2,500 publications contributing to the store of knowledge on environmental impacts on children’s health.

In its 2017 impact report, the agencies detail the compelling need for this research and the impressive accomplishments to dateSo it’s a real disappointment—although not really surprising—that the EPA has decided to pull out of this decades-long partnership and stop funding grants to children’s environmental health research centers. More on this below, but first….

The need for children’s health research

Children are not little adults; they are uniquely vulnerable to environmental risks. Their organs and systems are rapidly developing; they eat, drink, and breathe more than adults relative to body mass; and their behaviors make them more susceptible to environmental exposures. In addition, prenatal exposure to environmental toxicants can result in preterm births, low birth weight, and birth defects that can impact a child’s health and quality of life well into the future.

The American Lung Association (ALA) reports that nearly 141.1 million people live in counties where monitoring shows unhealthy levels of either ozone or particle or both. That’s 43.3% of our nation’s population breathing unhealthy air. This helps explain why some 6.2 million children in the US have asthma (for more on childhood asthma, see info from the ALA and the Centers for Disease Control). In addition to the very real social impacts that asthma has on children (and their parents)—like missing school, being unable to fully engage in outdoor activities, the often frightening visits to emergency departments, and the need to take medication—are the enormous economic costs. A recent study of the economic costs of pediatric asthma in the US found direct costs totally $5.92 BILLION, with average annual costs per child ranging from $3,076 to $13,612.

There are equally compelling data on other serious health outcomes in children exposed to environmental toxins. From cancer and neurodevelopmental disorders to acute and chronic impacts associated with lead, arsenic, pesticides, and toxins in consumer products, like phthalates and BPA.  

The accomplishments of the Children’s Centers

The EPA has lauded the accomplishments of the partnership, noting that “Through their groundbreaking work, the Children’s Centers have pushed the boundaries of clinical, field, and laboratory–based research. The centers have been hubs for research across disciplines critical to children’s health—from medicine, toxicology, genetics, epidemiology, and biology to social science, statistics, and informatics. The research has been disseminated through thousands of publications in diverse and peer-reviewed journals. The research findings lay a critical foundation for reducing health risks and improving quality of life for children and adults” (Impacts Report, page 12).

Examples of groundbreaking research include:

  • Effects of the pesticide chlorpyrifos on children’s brains
  • Effects of maternal exposure to air pollution on preterm birth and reduced birth weight
  • Associations between leukemia and exposure to tobacco smoke, pesticides, paint, organic solvents, polychlorinated biphenyls (PCBs), polybrominated diphenyl ethers (PBDEs), and PAHs
  • Cognitive and behavioral effects associated with prenatal exposure to airborne polycyclic aromatic hydrocarbons (PAHs)
  • Potential links between air pollution, pesticides, occupational exposures, phthalates, and risk of autism spectrum disorder in children
  • How chemicals in plastics and household items affect reproduction and onset of puberty

In addition, the centers go well beyond publishing their research in scientific journals. They serve as community resources, engaging in outreach, communication, and collaboration with community partners and organizations to disseminate vital scientific information on the ground. Their research also provides critical information for public health and environmental policy (for example, see here, here, here, here, here).

Another step backwards on children’s health

While the EPA’s decision to stop funding grants through the Children’s Environmental Health Centers may seem like a head-scratcher (or like looking a gift horse in the mouth, as my dear old dad would have said), it’s actually not so surprising.

Findings from long-term studies of the effects of chemicals on child health often pose economic, regulatory, and reputational headaches for the chemical industry and other producers. And industry interests are certainly top of mind for the Trump administration. The decision to cut this funding is just the latest in a pattern of rolling back public health and science-based protections at the EPA.

For example, the agency has decided that it’s no longer “appropriate and necessary” to regulate mercury and air toxics emissions from power plants. Yes, mercury! That well-known bad actor, especially hazardous to pregnant women, to the neurological development of their fetuses and to young children—causing impairments that can last a lifetime.

And let’s not forget the agency’s decision to override its own science on damaging effects of the pesticide chlorpyrifos on children’s developing brains. The ninth Circuit Court of Appeals saw it differently and ordered the EPA to finalize its proposed ban of chlorpyrifos, determining that EPA’s 2017 decision to refuse to ban the chemical was unlawful because it failed to justify keeping chlorpyrifos on the market, while the scientific evidence very clearly pointed to the link between chlorpyrifos exposure and neuro-developmental damage to children, and further risks to farmworkers and users of rural drinking water. 

Research today—healthy kids and adults tomorrow

Protecting our children from environmental harms is surely something we can all agree on. Doing the science to understand, reduce, and prevent these risks to children’s health takes knowledge, skills, interdisciplinary collaboration, and commitment. Researchers in the centers have certainly demonstrated all of that over the past two decades. But they need financial resources to continue this important and evolving work.

While we call out the EPA for its regressive decision, let’s also give a shout-out to the National Institute for Environmental Health Sciences (NIEHS). Though it alone will be hard pressed to close the financial gap left by the EPA’s abrupt exit from the partnership, the agency has publicized plans to fund five grants for new “Children’s Environmental Health Translation Centers.”

And let’s join together as advocates for children’s health and our collective future to let our elected leaders know that continued funding for such centers of excellence is in our national interest. To me, it’s a no-brainer.

Photo: EPA

How Scientists are Responding to On the Media’s Reporting on Researcher Harassment

The prolific public radio show On The Media last week explored how open records laws are used to disrupt public interest research at public universities and examined the challenges of creating laws that allow for scrutiny while protecting free speech. The reporter, Alana Casanova-Burgess, treated the issue with the complexity it deserves, and in the days since, I’ve heard from several professors around the country by email and phone.

In case you haven’t followed the issue, a recap: companies and activists increasingly seek private correspondence of public university researchers through open records requests, hoping to find information they can take out of context to confuse the public and discourage public interest research. North Dakota and Rhode Island recently modernized their open records laws, and a California legislator introduced a bill to improve California’s law. The legislation was recently put on hold while supporters and opponents work out their differences.

For some researchers who heard the show, the chilling feeling was all too familiar. Several academics doing great research reached out to me to thank me for being interviewed for the story. Not one wanted to go public for fear of putting a target on their back.

“I teach at a public university in Texas,” wrote one scientist. “Although I don’t get any grant funding, I am super careful about what I put on my syllabus and in emails. All I know is how much I self-censor—not an easy thing for me to do when I teach about [public] health.”

One of my undergraduate degrees is in rhetoric and communication theory, so how information and misinformation spreads has always been a strong interest and area of study for me. And I’m so thrilled that the California legislation has helped amplify a national conversation about this issue. Through On the Media and other reporting, millions of people have been introduced to the issue of harassment of researchers. And through this public conversation, we are finding where there is common ground.

“You have a bunch of groups that all think they’re doing what’s good for inquiry and democracy,” Berkeley Law Professor Claudia Polsky, who wrote a recent law review article about this issue, told the show. “We’re all making the same core moral claim but it leads us to a very different perspective on records requests.”

That’s one of the reasons I believe there is a long-term solution to this problem: since we all want to protect research and promote accountability, we just need to agree, to the extent practicable, on the right mechanisms that can get us there. UCS won’t support legislation that goes too far and compromises accountability. But we still want to see laws that protect the ability of scientists to pursue policy-relevant research regardless of the results.

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