For decades, researchers have been collecting samples from hundreds of thousands of women and tracking their health. The work has deepened our basic understanding of human health, but now the entire project is in danger.
When nurses Patricia Chubb, 70, and her mother, Charlotte Mae Rohrbaugh, 98, joined the fledgling Harvard University-ledNurses’ Health Studyin 1976, they had no idea it would last for nearly 50 years.
“It’s probably the longest, if not one of the longest, prospective health care studies for women that’s ever been done,” said Chubb, who lives in Pennsylvania. “They picked nurses to do the study because they know how to answer health questions correctly and can draw their own blood and the like — it’s very cost-effective.”
Study data gathered through the yearsfrom some 280,000 nurses in the United States has contributed enormously to improvinghow we live. The work has informeddietary recommendations, including national dietary guidelines;led to hormonal therapies for breast cancer prevention and treatment; and contributed to research abouthow nutrients, inflammatory markers and heavy metals influence disease development.
Yet all of that priceless data maysoon be discardeddue to President Donald Trump’s ongoing feud with Harvard over what Trump claims is a failure to protect Jewish students during campus protests.
On Monday, aninvestigation by the Trump administrationclaimed that Harvard was in “violent violation” of the Civil Rights Act by being “deliberately indifferent” or a “willful participant in anti-Semitic harassment of Jewish students, faculty, and staff.”
Harvard strongly disagreed with the administration’s claims.
Interestingly, Trump had posted onTruth Socialon June 20 that Harvard had “acted extremely appropriately” during negotiations and that he was close to a “Deal” with the university that would “be ‘mindbogglingly’ HISTORIC, and very good for our Country.”
But then, in the letter sent to Harvard on Monday, Trump officials made it clear Harvard would continue to lose “all federal financial resources,” including millions for research, if the university did not comply with the administration’s wishes.
Funding for the Nurses’ Health Study and its companion study for men, theHealth Professionals Follow-up Study, had already been abruptly withdrawn in mid-May, said Harvard nutritionist Dr. Walter Willett, who has led the studies since 1980.
Willett and his team were left scrambling to find the funds needed to protect freezers stocked with stool, urine and DNA specimens gathered from thousand of nurses for nearly five decades. Just the liquid nitrogen needed to keep the specimens frozen costs thousands of dollars a month.
“Of course, we would all love to have an agreement that lets us get on with research, education, and working to improve the health and well-being of everyone.” said Willett, a professor of epidemiology and nutrition at Harvard T.H. Chan School of Public Health in Boston, who has published over 2,000 papers on nutrition.
“But this can’t happen if we turn over admissions, faculty hiring and curriculum to governmental control.”
Twenty-one-year-old Jackie Desmond joined the Harvard-based study when she graduated from nursing school in 1978. She considered the research so valuable that she later enrolled her 9-year-old son Kyle in a spin-off study investigating family nutrition. At 41, he still participates.
“They send us questionnaires once or twice a year about lifestyle and nutrition, what medications you’re on, your lifestyle habits, when you sleep, when you eat, everything,” Desmond said. “I’ve sent them samples of blood, urine, feces, whatever they need.” The study even has solicited toenails, which carry markers of heavy metals.
One reason the study was so special is it was only focused on women, said Desmond, who is now 68 and lives in Connecticut.
“Before that, most studies were done only on men. So, it was about time to focus on studying women and they came up with some amazing information that’s been very helpful to many of us,” Desmond said.
“You know for that reason alone, these samples are irreplaceable — losing them might put women’s health research back many years,” she added.
For Desmond and Chubb, the cuts in research funding make no sense.
“There’s no connection in my mind between antisemitism and medical research. Why are you getting rid of decades of research? It’s infuriating,” Desmond said. “And it’s very personal — I guess they’ll just toss my DNA into the dump.”
The threats to cuts also arrive as the Trump administration pushes its “Make American Healthy Again” initiative, which Chubb finds ironic.
“You know what? There’s lots of research going on to get us healthier and keep us healthier, and those are cuts that should not be made,” Chubb said. “It’s so shortsighted to shoot first and aim later.”
Data from the Nurses’ Health Study has vastly improved how all Americans live and eat while also impacting the health of people around the world, Willett said.
“From the efforts of these dedicated nurses we learnedtrans fatswere terrible for health, and now those are basically gone from our food supply,” he said. “We also found one of the earliest links betweencigarette smokingand heart disease.”
Data from thenurses’ studiesfound red meat and alcohol can lead to breast cancer in women. Other key findings also proved lifestyle choices can improve health — the research identifieddietsthat may reduce risk of cognitive decline.
A list of scientific advances produced from the Nurses’ Health Study data appearson its website.
Dorothy Dodds, who died at 83, joined the original study in 1976. When her daughter Martha became a nurse in 1982, she joined the second wave of research, called the Nurses’ Health Study II. A third generation of the study isstill enrolling participants— the Nurses’ Health Study 3.
For Martha Dodds, now 68, her family’s years of dedication to the study is priceless.
“You know, nurses don’t get paid a lot,” Dodds said. “We do our work because we want to help others. We took the study seriously and were careful and honest with our answers.
“My one little part may have helped women cut down on alcohol consumption, or maybe it’ll help both men and women exercise more and cut back on trans fats,” Dodds added.
All of the nurses CNN spoke with consider their years of dedication to the Nurses’ Health Study a lifetime accomplishment.
“I’m so proud to be a participant, I’ll put it in my obituary,” Chubb said. “And my 98-year-old mom — who’s still got all her faculties, and some of other people’s, too — has chosen the Nurses’ Health Study for donations in lieu of flowers in her funeral plans.”
Chubb and her mother are in good company. Families ofnurses across the country have proudly listed their Nurses’ Health Study participation in their obituaries:Karen Ann Mudgettfrom Michigan,Donna Palmerfrom Georgia,Jeanette Thomasfrom Pennsylvania,Mary Ellen Natalefrom New Jersey,Patricia Anne Cobbfrom California,Marion Jonesfrom Florida,Irene Reesfrom Virginia and many more.
“And now these hundreds of thousands of hours of work by nearly 300,000 nurses will just be discarded?” Dodds said. “We’re going to take 50 years of research and all this biodata and just destroy it, make it useless?
“It’s like burning the Library of Congress — you just can’t get that back.”