Faculty of color fought to shed light on university's unethical experiments
ARI SHAPIRO, HOST:
In December, the University of California San Francisco Medical School issued a report revealing unethical experiments done by two doctors in its dermatology department in the 1960s and '70s. The report found the doctors injected and exposed 2,600 incarcerated men to pesticides without documentation of informed consent.
AILSA CHANG, HOST:
Now, UCSF has issued a formal apology, and one of the doctors, Howard Maibach, is still alive. He has said he regrets his participation, but he also denies wrongdoing.
SHAPIRO: On the surface, it was a story about an institution trying to take responsibility for the past. But in the media reports, in the university's own telling, something key was missing - the role faculty of color played in bringing the truth to light. A warning - this story contains graphic descriptions of harmful and cruel medical experiments. NPR's Sandhya Dirks reports.
SANDHYA DIRKS, BYLINE: The report was clear. The doctors injected pesticides into incarcerated men. They put cages filled with mosquitoes on their arms to test the attractiveness of human skin, all without proper written consent.
RUPA MARYA: When this story came out and an email went to my colleague in dermatology, she forwarded it to me immediately.
DIRKS: That's Rupa Marya, a doctor at UCSF. The details of the report were disturbing, but she was also worried about the story the school was telling, one that focused on the two doctors who had done the wrong thing as the school now did the right thing.
MARYA: And what did we see in the next 24 hours? The Washington Post, The LA Times - everyone's writing the UCSF apology story.
DIRKS: That version of the story apologizing for a hidden past, Marya says, is deeply incomplete. One of the accused doctors, Howard Maibach, is not only still alive. He's still employed at the school. What happened wasn't really past. It also wasn't really hidden.
MARYA: It's not just about this one sick doctor. It's about a sick system that allows for these things to happen.
DIRKS: And the school didn't just decide to reckon with this complicated past all on its own. It was pushed by doctors of color like Marya. Marya originally heard about the prison experiments from a doctor in the dermatology department, Jenna Lester.
JENNA LESTER: I first learned about Howard Maibach and how he carried out research when I was a resident at UCSF.
DIRKS: Around 2016, she found a book in the library that chronicled unethical experiments on humans, and it named Maibach and his colleague Dr. William Epstein. Epstein ran the pesticide experiments at a state prison in Vacaville, Calif. He was also chairman of UCSF's dermatology department for years. He died in 2006. As students in the 1950s and early '60s, both men also participated in Philadelphia's Holmesburg Prison experiments, where mostly Black incarcerated men were injected with asbestos and other toxins without their consent.
LESTER: To be very, very clear, like, U.S. health care was built on this model.
DIRKS: Take, for example, the Tuskegee study, where the U.S. government watched poor Black men die from syphilis, a curable disease.
LESTER: We often hold up Tuskegee, which was an atrocity and terrible. And I don't mean to minimize it at all, but by doing that, I think we forget that there are so many examples.
DIRKS: When Lester found out about the living example at her own school, as a young, Black doctor, she didn't quite know what to do.
LESTER: It's kind of sad to think that maybe I just accepted it as, this is how things are, because that's a survival tactic.
DIRKS: But in 2020, she told Rupa Marya. It was the time of the so-called racial reckoning, and some faculty of color, including Marya, had formed an anti-racism task force.
PHUOC LE: We had a whole spreadsheet of potential ideas, and that's when Rupa mentioned Maibach.
DIRKS: Phuoc Le, a doctor and UCSF professor, was also part of the task force. He was shocked, but he soon realized for some, it was an open secret.
LE: There was a big kind of a hush-hush type of situation because he's so prominent in the department and was still actively teaching.
DIRKS: When the task force sent a petition to university leaders, one of their top demands...
MARYA: Was that Howard Maibach be asked to step down.
DIRKS: That's Rupa Marya again. She says instead, the university set up a program for historical reconciliation in part to investigate these prison experiments, and that resulted in this report. As for further academic or employment investigation into Maibach, the university says the statute of limitations has passed. He's still an employee.
MARYA: Our attempts at creating equity and addressing legacies of medical racism could only go so far because there are invisible structures that protect people like Howard Maibach.
DIRKS: Maibach is now in his 90s, and he denies the experiments caused anyone harm. NPR reached out to him with a list of questions. His son, Edward Maibach, responded with a statement. His family supports the work of historical reconciliation, but he believes his father was scapegoated. He wrote, UCSF should have thoroughly investigated the university's entire program of research conducted in California's prisons by many faculty from multiple departments over more than two decades. The report didn't stop at the prison experiments. It also looked at Maibach's work after, finding, and I quote, "his interest in racial, ethnic and national skin differences grew." Jenna Lester points out the science is clear. Race is a social construct. It has no basis in biology.
LESTER: It makes no sense that you would have some physiologic difference.
DIRKS: But those ideas permeate the profession. A 2016 study showed half of American white medical trainees falsely believe Black people have less sensitive nerve endings and thicker skin than white people. In a letter to the university, Maibach wrote he now understands race has no biological basis. Still, the UCSF report concludes Maibach's long history of writing about skin differences along racial lines perpetuated the continuance of racial science in dermatology. NPR asked to speak with leaders at UCSF. They declined to talk, including the new head of UCSF's dermatology department, who is also the president of the American Medical Association, Jack Resneck.
(SOUNDBITE OF ARCHIVED RECORDING)
JACK RESNECK: The work is messy. The work is uncomfortable.
DIRKS: Resneck did speak about UCSF's reckoning at an AMA forum in February.
(SOUNDBITE OF ARCHIVED RECORDING)
RESNECK: You're going to encounter people who want to bury the past or skip this painful step. And at the same time, you're going to have others who hold you accountable for not moving fast enough.
DIRKS: The folks holding the school to account are the same ones who believed something should be done in the first place - faculty of color like Jenna Lester. Lester is also the founder of UCSF's Skin of Color Dermatology Clinic, which she created to address disparities in care for Black and brown patients.
LESTER: How can I possibly even do this unless we reckon with these horrific harms that have already been done?
DIRKS: UCSF says it's not done reckoning with this case or others. Both Jenna Lester and Rupa Marya say they're hopeful. But they say the school needs to offer reparations to subjects of the experiments and their families, and it needs to take full responsibility for its role not just in unearthing the past but in burying it, too. Sandhya Dirks, NPR News.
(SOUNDBITE OF MAHALIA SONG, "LETTER TO UR EX") Transcript provided by NPR, Copyright NPR.