Christine Coughlin, Wake Forest University and Nancy M. P. King, Wake Forest University

As the Trump administration continues to make significant cuts to NIH budgets and personnel and to freeze billions of dollars of funding to major research universities – citing ideological concerns – there’s more being threatened than just progress in science and medicine. Something valuable but often overlooked is also being hit hard: preventing research abuse.

The National Institutes of Health has been the world’s largest public funder of biomedical research. Its support helps translate basic science into biomedical therapies and technologies, providing funding for nearly all treatments approved by the Food and Drug Administration from 2010 to 2019. This enables the U.S. to lead global research while maintaining transparency and preventing research misconduct.

While the legality of directives to shrink the NIH is unclear, the Trump administration’s actions have already led to suspended clinical trials, institutional hiring freezes and layoffs, rescinded graduate student admissions, and canceled federal grant review meetings. Researchers at affected universities say that funding will delay or possibly eliminate ongoing studies on critical conditions like cancer and Alzheimer’s.

It is clear to us, as legal and bioethics scholars whose research often focuses on the ethical, legal and social implications of emerging biotechnologies, that these directives will have profoundly negative consequences for medical research and human health, with ripple effects that will last decades. Our scholarship demonstrates that in order to contribute to knowledge and, ultimately, to biomedical treatments, medical research at every stage depends on significant infrastructure support and ethical oversight.

Our recent focus on brain organoid research – 3D lab models grown from human stem cells that simulate brain structure and function – shows how federal support for research is key to not only promote innovation, but to protect participants and future patients.

History of NIH and research ethics

The National Institutes of Health began as a one-room laboratory within the Marine Hospital Service in 1887. After World War I, chemists involved in the war effort sought to apply their knowledge to medicine. They partnered with Louisiana Sen. Joseph E. Ransdell who, motivated by the devastation of malaria, yellow fever and the 1928 influenza pandemic, introduced federal legislation to support basic research and fund fellowships focusing on solving medical problems.

By World War II, biomedical advances like surgical techniques and antibiotics had proved vital on the battlefield. Survival rates increased from 4% during World War I to 50% in World War II. Congress passed the 1944 Public Health Services Act to expand NIH’s authority to fund biomedical research at public and private institutions. President Franklin D. Roosevelt called it “as sound an investment as any Government can make; the dividends are payable in human life and health.”

As science advanced, so did the need for guardrails. After World War II, among the top Nazi leaders prosecuted for war crimes were physicians who conducted experiments on people without consent, such as exposure to hypothermia and infectious disease. The verdicts of these Doctors’ Trials included 10 points about ethical human research that became the Nuremberg Code, emphasizing voluntary consent to participation, societal benefit as the goal of human research, and significant limitations on permissible risks of harm. The World Medical Association established complementary international guidelines for physician-researchers in the 1964 Declaration of Helsinki.

In the 1970s, information about the Tuskegee study – a deceptive and unethical 40-year study of untreated syphilis in Black men – came to light. The researchers told study participants they would be given treatment but did not give them medication. They also prevented participants from accessing a cure when it became available in order to study the disease as it progressed. The men enrolled in the study experienced significant health problems, including blindness, mental impairment and death.

The public outrage that followed starkly demonstrated that the U.S. couldn’t simply rely on international guidelines but needed federal standards on research ethics. As a result, the National Research Act of 1974 led to the Belmont Report, which identified ethical principles essential to human research: respect for persons, beneficence and justice.

Federal regulations reinforced these principles by requiring all federally funded research to comply with rigorous ethical standards for human research. By prohibiting financial conflicts of interest and by implementing an independent ethics review process, new policies helped ensure that federally supported research has scientific and social value, is scientifically valid, fairly selects and adequately protects participants.

These standards and recommendations guide both federally and nonfederally funded research today. The breadth of NIH’s mandate and budget has provided not only the essential structure for research oversight, but also key resources for ethics consultation and advice.

Brain organoids and the need for ethical inquiry

Biomedical research on cell and animal models requires extensive ethics oversight systems that complement those for human research. Our research on the ethical and policy issues of human brain organoid research provides a good example of the complexities of biomedical research and the infrastructure and oversight mechanisms necessary to support it.

Organoid research is increasing in importance, as the FDA wants to expand its use as an alternative to using animals to test new drugs before administering them to humans. Because these models can simulate brain structure and function, brain organoid research is integral to developing and testing potential treatments for brain diseases and conditions like Alzheimer’s, Parkinson’s and cancer. Brain organoids are also useful for personalized and regenerative medicine, artificial intelligence, brain-computer interfaces and other biotechnologies.

Brain organoids are built on knowledge about the fundamentals of biology that was developed primarily in universities receiving federal funding. Organoid technology began in 1907 with research on sponge cells, and continued in the 1980s with advances in stem cell research. Since researchers generated the first human organoid in 2009, the field has rapidly expanded.

These advances were only possible through federally supported research infrastructure, which helps ensure the quality of all biomedical research. Indirect costs cover operational expenses necessary to maintain research safety and ethics, including utilities, administrative support, biohazard handling and regulatory compliance. In these ways, federally supported research infrastructure protects and promotes the scientific and ethical value of biotechnologies like brain organoids.

Brain organoid research requires significant scientific and ethical inquiry to safely reach its future potential. It raises potential moral and legal questions about donor consent, the extent to which organoids should be grown and how they should be disposed, and consciousness and personhood. As science progresses, infrastructure for oversight can help ensure these ethical and societal issues are addressed.

New frontiers in scientific research

Since World War II, there has been bipartisan support for scientific innovation, in part because it is an economic and national security imperative. As Harvard University President Alan Garber recently wrote, “[n]ew frontiers beckon us with the prospect of life-changing advances. … For the government to retreat from these partnerships now risks not only the health and well-being of millions of individuals but also the economic security and vitality of our nation.”

Cuts to research overhead may seem like easy savings, but it fails to account for the infrastructure that provides essential support for scientific innovation. The investment the NIH has put into academic research is significantly paid forward, adding nearly US$95 billion to local economies in fiscal year 2024, or $2.46 for every $1 of grant funding. NIH funding had also supported over 407,700 jobs that year.

President Donald Trump pledged to “unleash the power of American innovation” to battle brain-based diseases when he accepted his second Republican nomination for president. Around 6.7 million Americans live with Alzheimer’s, and over a million more suffer from Parkinson’s. Hundreds of thousands of Americans are diagnosed with aggressive brain cancers each year, and 20% of the population experiences varying forms of mental illness at any one time. These numbers are expected to grow considerably, possibly doubling by 2050.

Organoid research is just one of the essential components in the process of learning about the brain and using that knowledge to find better treatment for diseases affecting the brain.

Science benefits society only if it is rigorous, ethically conducted and fairly funded. Current NIH policy directives and steep cuts to the agency’s size and budget, along with attacks on universities, undermine globally shared goals of increasing understanding and improving human health.

The federal system of overseeing and funding biomedical science may need a scalpel, but to defund efforts based on “efficiency” is to wield a chainsaw.

Christine Coughlin, Professor of Law, Wake Forest University and Nancy M. P. King, Emeritus Professor of Social Sciences and Health Policy, Wake Forest University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Bruce J. MacFadden, University of Florida

It might seem surprising, but federal research funding isn’t just for scientists. A component of many federal grants that support basic research requires that discoveries be shared with nonscientists. This component, referred to as “broader impacts” by the National Science Foundation, can make a big difference for K-12 students and teachers, museumgoers, citizen scientists and other people interested in science, while also helping the scientists themselves give back to the taxpayers that fund their work.

Basic research, often done because of a curious scientist’s interest, may not initially have a direct application, like developing the smartphone or curing a disease. But these discoveries build important knowledge in the natural sciences, engineering, mathematics and related disciplines.

The U.S. is a world leader in scientific and technological innovation. On the federal level, the National Science Foundation, or NSF, is one of the primary funders of this kind of basic research. In 2022, the federal government funded 40% of all basic research done in the U.S., with the remainder coming from other sources, including the business sector.

During World War II, President Franklin D. Roosevelt wanted to position the U.S. for strategic and economic leadership worldwide. He commissioned physicist Vannevar Bush to develop a vision for the future of U.S. science and technology. His 1945 report, “Science: the Endless Frontier,” became the blueprint for government-funded basic research. In 1950, Congress created the National Science Foundation to promote the progress of science, advance national prosperity and welfare and secure the national defense.

During the early decades of NSF, the 1950s until the late 1990s, proposals were mostly evaluated based on the quality of the science and the scientists doing the work. But then, the foundation created a new system, still in place today.

Thus, each NSF research proposal is now peer-reviewed based on two criteria: intellectual merit, or the quality and novelty of the science and track record of the research team, and “broader impacts” – related activities that disseminate the discoveries to general audiences.

Intellectual merit is about advancing science knowledge and innovation, while broader impacts describe why people who aren’t scientists should care, and how society could benefit from this research.

Another pragmatic aspect to broader impacts is that taxpayers pay for these activities, so it’s important for them, and Congress, to understand their return on investment. These broader impacts activities communicate about, and engage the public in, research in a variety of ways.

While researchers usually understand the intellectual merit of their NSF-funded projects, these broader impacts can be challenging to characterize.

Broader impact activities

Since childhood, I’ve had an interest in paleontology — the study of fossils and what we can learn from them about prehistoric life. This field is primarily basic research — adding to knowledge about ancient life. As a scientist conducting basic research, I’ve felt the responsibility to give back to society through broader impacts activities, and I’ve seen many of the benefits that these activities can have.

My primary area of interest has been extinct mammals of the Americas, particularly the 55-million-year-old record of fossil horses on this continent. For years, NSF supported my discoveries about this interesting group of animals. Fossil horses are a classic example of evolution — in books and museum exhibits.

Many people are generally interested in horses, so it’s easy to attract their attention with this charismatic group. They also are often surprised to learn that prehistoric horses were native to North America for millions of years. Then, during historical times, they were first introduced by humans onto the continent about 500 years ago.

Over the years, my research team has used grant-funded broader impact activities to teach people about these fossil horses and our research. One example included working with K-12 science teachers to develop lesson plans. The students measured fossil horse teeth and explored how their teeth adapted to feeding on grasses. We’ve also developed exhibits on fossil horses and studied how they communicate science to museum visitors.

Science teachers have joined our fieldwork to collect fossils along the Panama Canal during its recent expansion. I’ve given many talks and collaborated with fossil clubs and their members throughout the U.S. We’ve also promoted projects like Fossils4Teachers where fossil collectors donated their fossils and worked alongside K-12 teachers to develop lesson plans that were implemented back in the teachers’ classrooms.

We’ve also been able to activate peoples’ interest in other animal groups — such as fossil sharks. Through our Scientist in Every Florida School program, we gave middle school teachers study kits with real fossil shark teeth. Their students learned to identify the shark teeth and then trained computers to identify the teeth using machine learning, a type of artificial intelligence.

Broader impact outcomes

Broader impacts activities like these can have a variety of short- and long-term outcomes. More than 50 million people visit natural history museums in the U.S. annually. Activities that promote museums can reach large numbers of people in their pursuit of lifelong learning.

More broadly, participatory science interest groups can allow people to learn about science while informing basic research projects. Within the field of natural history, a few popular examples include the Merlin app and the iNaturalist app, both of which have millions of active observers. Merlin encourages people to submit their observations of birds, and iNaturalist accepts sightings of plants, animals and fossils, which researchers can carefully vet and use as data.

Many of the K-12 teachers my team has worked with report that they feel more confident teaching the new science content that they learned from our collaborations.

Interestingly, although much of the research on science professional development focuses on the teachers, scientists also report a high level of satisfaction and improved communication skills after working with these teachers, both in the field and back in the classroom.

Basic research benefits for society

Generations of U.S. scientists have greatly benefited from federal investments in basic research. In the 75 years since NSF’s founding, the organization has funded hundreds of thousand projects to advance science and technology.

These have supported basic research discoveries and also the training and career development of the tens of thousands of scientists working on these projects annually.

Many prominent scientists have gone on to be productive leaders and innovators in the U.S. and internationally. NSF has funded more than 268 Nobel laureates.

While NSF invests in the discovery of foundational knowledge about the natural world, funded projects have not traditionally had direct applications for societal benefits. To be sure, however, many of NSF’s projects – for example, on lasers and nanotechnology – started out as curiosity-driven basic research and ended up with immense applications for technological innovation and economic prosperity.

For example, mapping the Earth’s ocean floor’s magnetic properties during World War II helped scientists understand how the crust moves and mountains form. This led to the plate tectonic revolution in the earth sciences. This line of basic research then led to an important application: predicting the probable location of high-risk earthquake zones worldwide.

None of these downstream applications and benefits to society would have been realized without basic research discoveries supported by federal agencies such as NSF, and the further value added through broader impacts activities.

Bruce J. MacFadden, Distinguished Professor Emeritus, University of Florida

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Elizabeth Hintz, University of Connecticut and Marlene D. Berke, Yale University

For people with chronic gynecological pain conditions, pain can be constant, making everyday activities like sitting, riding a bicycle and even wearing underwear extremely uncomfortable. For many of these people – most of whom identify as women – sexual intercourse and routine pelvic exams are unbearable.

Endometriosis and vulvodynia, or chronic genital pain, are common gynecological conditions that can cause severe pain. They each affect about 1 in 10 American women.

Yet many women face skepticism and gaslighting in health care settings when they seek care for this type of pain.

We know this well through our research on social cognition and on how people with misunderstood health conditions manage difficult conversations with their doctors and family, as well as through volunteer work alongside people living with these conditions.

We’ve consistently found that medical gaslighting around chronic gynecological pain is a complex societal problem, fueled by holes in medical research and training.

‘It’s all in your head’

A 2024 study of patients who went to a clinic for vulvovaginal pain – pain experienced in the external female genitals and vagina – found that 45% of these patients had been told that they “just needed to relax more” and 39% were made to feel that they were “crazy”. A staggering 55% had considered giving up on seeking care.

These results echo what one of us – Elizabeth Hintz – found in her 2023 meta-synthesis: Female patients with chronic pain conditions frequently hear this “It’s all in your head” response from doctors.

Another study followed patients in two different major U.S. cities who were seeking care for vulvovaginal pain. The researchers found that most patients saw multiple clinicians but never received a diagnosis. Given the challenges of seeking medical care, many patients turn to social media sources like Reddit for support and information.

These studies, among others, illustrate how people with these conditions often spend years going to clinician after clinician seeking care and being told their pain is psychological or perhaps not even real. Given these experiences, why do patients keep seeking care?

“Let me describe the pain that would drive me to try so many different doctors, tests and treatments,” a patient with vulvovaginal pain said to her doctor. For her, sex “is like taking your most sensitive area and trying to rip it apart.”

“I can now wear any pants or underwear that I want with no pain,” said another patient after successful treatment. “I never realized how much of a toll the pain took on my body every day until it was gone.”

Medical gaslighting

Many patients worldwide experience medical gaslighting – a social phenomenon where a patient’s health concerns are not given appropriate medical evaluation and are instead downplayed, misattributed or dismissed outright.

Medical gaslighting is rooted in centuries of gender bias in medicine.

Women’s reproductive health issues have long been dismissed as psychological or “hysterical.” Genital and pelvic pain especially has been misattributed to psychological rather than biological causes: A century ago, Freudian psychoanalysts incorrectly believed that female sexual pain came from psychological complexes like penis envy.

These historical views help shed light on why these symptoms are still not taken seriously today.

Consequences of medical gaslighting

In addition to the physical toll of untreated pain, medical gaslighting can take a psychological toll. Women may become isolated when other people do not believe their pain. Some internalize this disbelief and can begin to doubt their own perceptions of pain and even their sanity.

This cycle of gaslighting compounds the burden of the pain and might lead to long-term psychological effects like anxiety, depression and post-traumatic stress symptoms. For some, the repeated experience of being dismissed by clinicians erodes their sense of trust in the health care system. They might hesitate to seek medical attention in the future, fearing they will once again be dismissed.

Although some chronic gynecological pain conditions like endometriosis are gaining public attention and becoming better understood, these dynamics persist.

A funding crisis

Part of the reason for the misunderstanding surrounding chronic gynecological pain conditions is the lack of research on them. A January 2025 report from the National Academies found that research on diseases disproportionately affecting women were underfunded compared with diseases disproportionately affecting men.

This problem has gotten worse over time. The proportion of funding from the National Institutes of Health spent on women’s health has actually declined over the past decade. Despite these known disparities, in April 2025 the Trump administration threatened to end funding for the Women’s Health Initiative, a long-running women’s health research program, further worsening the problem.

Without sustained federal funding for women’s health research, conditions like endometriosis and vulvodynia will remain poorly understood, leaving clinicians in the dark and patients stranded.

Disparities in care

As hard as it is for any female patient to have their pain believed and treated, gaining recognition for chronic pain is even harder for those who face discrimination based on class or race.

One 2016 study found that half of the white medical students surveyed endorsed at least one false belief about biological differences between Black and white patients, such as that Black people have physically thicker skin or less sensitive nerve endings than white people. The medical students and residents who endorsed these false beliefs also underestimated Black patients’ pain and offered them less accurate treatment recommendations.

Studies show that women are more likely to develop chronic pain conditions and report more frequent and severe pain than men. But women are perceived as more emotional and thus less reliable in describing their pain than men. Consequently, female patients who describe the same symptoms as male patients are judged to be in less pain and are less likely to be offered pain relief, even in emergency settings and with female clinicians. Compared to male patients, female patients are more likely to be prescribed psychological care instead of pain medicine.

These lingering erroneous beliefs about gender and race are key reasons patients’ pain is dismissed, misunderstood and ignored. The very real-life consequences for patients include delayed diagnosis, treatment and even death.

Practical steps to disrupt medical gaslighting

Correcting these problems will require a shift in clinical training, so as to challenge biased views about pain in women and racial minorities and to educate clinicians about common pain conditions like vulvodynia. Research suggests that medical training needs to teach students to better listen to patients’ lived experiences and admit when an answer isn’t known.

In the meantime, people navigating the health care system can take practical steps when encountering dismissive care.

They can educate themselves about chronic gynecological pain conditions by reading books like “When Sex Hurts: Understanding and Healing Pelvic Pain” or educational information from trusted sources like the International Society for the Study of Women’s Sexual Health, the International Pelvic Pain Society and the International Society for the Study of Vulvovaginal Disease.

Although these steps do not address the roots of medical gaslighting, they can empower patients to better understand the medical conditions that could cause their symptoms, helping to counteract the effects of gaslighting.

If someone you know has experienced medical gaslighting and would like support, there are resources available.

Organizations like The Endometriosis Association and the National Vulvodynia Association offer support networks and information – like how to find knowledgeable providers. Additionally, connecting with patient advocacy groups like Tight Lipped can provide opportunities for patients to engage in changing the health care system.

Elizabeth Hintz, Assistant Professor of Health Communication, University of Connecticut and Marlene D. Berke, PhD in Psychology, Yale University

This article is republished from The Conversation under a Creative Commons license. Read the original article.