WASHINGTON (Circa) - Researchers are raising new questions about what happened to tissue, blood and other samples collected decades ago as part of unethical human experiments in Tuskegee, Alabama, and Guatemala. Their inquiry also questions whether biospecimens collected by American doctors in the two controversial experiments conducted by the U.S. government may have been used in other research projects. And their work comes after a best-selling book and HBO movie brought the conversation about the ethics of secondary research to the mainstream.
"It really didn’t come to a public reckoning until Rebecca Skloot wrote her “Immortal Life of Henrietta Lacks” book and people started to realize this is what was happening with the pieces of them," explained lawyer and ethicist Kayte Spector-Bagdady, Chief of the Research Ethics service at the Center for Bioethics & Social Sciences at the University of Michigan Medical School.
As the movie and book explain, Lacks' cells were taken without her consent and then used again and again in secondary experiments to make incredible advancements. It's the kind of scenario Spector-Bagdady spends a lot of time thinking about. Lately, her time has been consumed with a similar set of questionable cases and a lingering question: What happened to the samples collected in what experts call the two most infamous human experiments ever conducted by the U.S. government?
"People don't fully understand that when we collect pieces of their body that we can keep it and keep doing ongoing research."
Samples known to scientists and researchers as biospecimens, can be blood, tissue and other biological samples collected in the course of experimentation or medical procedures. Scientists can pull biospecimens from older experiments to assist with their efforts to make modern medical breakthroughs. But when those samples were collected in unethical work or without permission, they can also reignite controversy and grief. That's what makes the use of biospecimens collected from the Tuskegee and Guatemala experiments of great concern to ethicists.
"I wouldn't be surprised if many of the people from the Tuskegee experiment community or from the Guatemala experiment community didn’t know that samples had been collected and sent to U.S. biorepositories and are possibly still there," Spector-Bagdady said during an interview in her office in Ann Arbor.
Many Americans may not even be aware of the experiments and the stunning details involved. In the late 1940s, the U.S. government deliberately infected people in Guatemala with sexually transmitted diseases without their consent. The work, featured in a 5-part Circa docu-series, was kept secret for decades, eventually resulting in an apology from the Obama Administration in 2010.
Many of the same American doctors who worked in Guatemala were also involved in a similar secret experiment in Tuskegee, Alabama. In that research, the government watched men who were already infected with syphilis for forty years, but never treated them. Records show in both experiments that potentially thousands of samples were collected and put in the government’s hands along the way.
"One of the things that the Tuskegee researchers had done was they would pay for these men’s funerals if the family consented to a post-mortem autopsy and specimens and blood were collected from the Tuskegee experiments and sent to U.S. biorepositories for research and that’s the same thing that happened down in Guatemala," Spector-Bagdady told Circa.
So what happened to the specimens from Guatemala and Tuskegee - those tiny pieces of people victimized by the government. And what other experiments used them? Those are the questions Spector-Bagdady and Dr. Paul Lombardo, a professor of law from Georgia State University College of Law, are asking in a new academic paper. They believe there’s evidence the samples are still sitting in U.S. government storage unaccounted for. The pair point to records that show biospecimens were sent to a Georgia lab overseen by the U.S. Public Health Service. Other records also show follow-up testing using the samples was done by the CDC and other researchers.
"We have no record of their destruction but when we queried the CDC, they said they didn't have any record of ever having them, which of course can’t be correct. So I think that another round is warranted to look at where these specimens are still stored and what happened to them," she said.
Spector-Bagdady and Lombardo went to the CDC, filing a public information request late last year after digging through thousands of archived medical and historical records. The pair had extensive knowledge and access to everything from physician correspondence to lab reports and medical data as a result of their work on President Obama's Presidential Commission for the Study of Bioethics, which investigated the Guatemala experiments.
It took less than a month for the CDC to respond, saying, it searched and found no record of any documents related samples from 1932-1972 using any of the following terms: syphilis, STD, negro, Tuskegee or Guatemala.
In 2008, a senior advisor at the CDC talked about the meticulous tracking and management of samples during a congressional subcommittee hearing. At that time, Dr. Janet Nicholson with the Coordinating Center for Infectious Disease at the CDC said the agency "manages its specimens in a manner commensurate with the scientific integrity required by HHS guidelines and policies.”
She also commented on the frequency with which samples are tossed, explaining to lawmakers, “In extremely rare circumstances some of our archived specimens may be destroyed because of lack of relevance, loss of viability during storage, lack of appropriate documentation, space limitations or when IRBs, the institutional review board, regulations require so.”
But the CDC's response to Spector-Bagdady and Lombardo indicates there was no paperwork related to the destruction of samples from Tuskegee or Guatemala. That’s why they’re now calling for a public accounting of the biospecimens, which they say have likely aged too much to be scientifically useful at this point.
Circa also sent a separate FOIA request to the National Institutes of Health in June to inquire as to whether that agency might potentially know the whereabouts of the experiment biospecimens. Their response, which indicated it had no records related to the experiments, took just six days.
We asked Spector-Bagdady how it's possible that the government doesn't know whether these biospeciments from historically significant experiments still exist? She told us, "I think it is impossible that we don’t, that someone doesn’t know. But it’s sort of like, how did we not know about the Guatemala experiments to begin with? How did we not know about Tuskegee for almost 40 years? There’s a difference between the public knowing something and people involved knowing something. So I am sure there is a person, if we can get to them, who knows the locations of these specimens. But we just need to figure out who that is."
In its response to Circa, the CDC echoed the same thing it told the researchers, telling us they checked and they don’t have biospecimens from Tuskegee or Guatemala. An agency representative said, "CDC verifies the origin of all specimens stored at our facilities. We continually check specimens in our laboratory where serologic tests are stored and we dispose of any specimens where we don’t have enough epidemiologic or study data as required by protocol. No specimens from the Tuskegee study were identified in CDC specimen banks during our verification process. We cannot speculate about inventory at other US biorepositories." The CDC didn't respond to specific follow-up questions.
But for Spector-Bagdady and her research partner, the continued quest to understand what happened to the biospecimens isn’t a matter of housekeeping some old records. It’s about honoring the people whose bodies were abused for science.
"I don’t think that these specimens have ongoing research value, but they do have value to the people that they came from and the communities they came from," she said. "I can only speak to myself but I feel like if I had family members that were part of horribly unethical experiments and I felt like there were still pieces of them out there, potentially being used in experiments, but at least being housed in the government, I would at least want to be asked what I wanted done with them."