Peter Buxtun, whistleblower who exposed Tuskegee syphilis study, dies aged 86; Associated Press via The Guardian, July 15, 2024

 Associated Press via The Guardian; Peter Buxtun, whistleblower who exposed Tuskegee syphilis study, dies aged 86

"Peter Buxtun, the whistleblower who revealed that the US government allowed hundreds of Black men in rural Alabama to go untreated for syphilis in what became known as the Tuskegee study, has died. He was 86...

Buxtun is revered as a hero to public health scholars and ethicists for his role in bringing to light the most notorious medical research scandal in US history. Documents that Buxtun provided to the Associated Press, and its subsequent investigation and reporting, led to a public outcry that ended the study in 1972.

Forty years earlier, in 1932, federal scientists began studying 400 Black men in Tuskegee, Alabama, who were infected with syphilis. When antibiotics became available in the 1940s that could treat the disease, federal health officials ordered that the drugs be withheld. The study became an observation of how the disease ravaged the body over time...

In his complaints to federal health officials, he drew comparisons between the Tuskegee study and medical experiments Nazi doctors had conducted on Jews and other prisoners. Federal scientists did not believe they were guilty of the same kind of moral and ethical sins, but after the Tuskegee study was exposed, the government put in place new rules about how it conducts medical research. Today, the study is often blamed for the unwillingness of some African Americans to participate in medical research.

“Peter’s life experiences led him to immediately identify the study as morally indefensible and to seek justice in the form of treatment for the men. Ultimately, he could not relent,” said the CDC’s Pestorius."

Scientists Raise Concerns About Revisions to Human Research Regulations; The Scientist, February 19, 2019

Katarina Zimmer, The Scientist; Scientists Raise Concerns About Revisions to Human Research Regulations

"When Henrietta Lacks visited the Johns Hopkins Medical Center in the 1950s to be treated for cervical cancer, she had no idea that some of her cancer cells would be used to create one of the most scientifically valuable and financially profitable cell lines that is used in labs today. Nor was she asked for permission.

Lacks’s experience has become nationally acknowledged as a shameful episode in the history of biomedical research in the US—particularly after the publication of a popular book about Lacks and her family—and forced the scientific community to consider how to conduct ethical research with human samples. The case was one of the reasons for a heated debate during a recent, six-year-long process of revising the Common Rule, a package of regulations adopted in the 1990s intended to ensure that all federally funded research conducted on human subjects is done ethically.

The revisions, enacted last month, are an attempt to strike a better balance between patients’ need for privacy and the benefits of using their tissue for research. In a paper published January 31 in JAMA Oncology, a group of clinicians and ethicists from the University of Michigan and the University of Pennsylvania argue that the revisions could have unintended consequences for research with various types of biospecimens, and propose that regulators should consider them differently when creating research protections."