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."

National Research Act at 50: An Ethics Landmark in Need of an Update; The Hastings Center, July 12, 2024

Mark A. Rothstein and Leslie E. Wolf, The Hastings Center; National Research Act at 50: An Ethics Landmark in Need of an Update

"On July 12, 1974, President Richard M. Nixon signed into law the National Research Act, one of his last major official actions before resigning on August 8. He was preoccupied by Watergate at the time, and there has been speculation about whether he would have done this under less stressful circumstances. But enactment of the NRA was a foregone conclusion. After a series of legislative compromises, the Joint Senate-House Conference Report was approved by bipartisan, veto-proof margins in the Senate (72-14) and House (311-10).

The NRA was a direct response to the infamous Untreated Syphilis Study at Tuskegee whose existence and egregious practices disclosed by whistleblower Peter Buxtun were originally reported by Associated Press journalist Jean Heller in the Washington Star on July 25, 1972.  After congressional hearings exposing multiple research abuses, including the Tuskegee syphilis study, and legislative proposals in 1973, support coalesced around legislation with three main elements: (1) directing preparation of guidance documents on broad research ethics principles and various controversial issues by multidisciplinary experts appointed to a new federal commission, (2) adopting a model of institutional review boards, and (3) establishing federal research regulations applicable to researchers receiving federal funding.

This essay reflects on the NRA at 50. It traces the system of research ethics guidance, review, and regulation the NRA established; assesses how well that model has functioned; and describes some key challenges for the present and future. We discuss some important substantive and procedural gaps in the NRA regulatory structure that must be addressed to respond to the ethical issues raised by modern research."