Wednesday, April 3, 2013

Remembering Practices We'd Rather Forget

There is an effort under way, with significant support and compelling rationale, to address two sources of shame in American medical research by stripping a disgraced physician’s name from a significant award.

Inhumane, racist practices were carried out under the physician’s oversight. At Tuskegee, Alabama, African American men, believing they were receiving medical care for sexually transmitted diseases, were instead being studied for progression of the disease. This went on for forty years. In Guatemala, scientists went a step further -- actually infecting mental patients, prisoners and soldiers. Some of the practices were horrific, and thousands were affected.

Knowing this, it is chilling to think that an annual award for lifetime achievement in preventing and controlling sexual infections has for more than 40 years carried the doctor’s name, in honor of his work. The first award, in fact, was granted around the same time the Tuskegee experiments ended.

As remembered in the New York Times, Dr. Thomas Parran Jr. was a giant of western medicine who for more than a decade served as American’s sixth surgeon general and “used what was then a supremely powerful position to lift American public health to the front ranks.”

According to the writer, Dr. Lawrence K. Altman, Parran played major roles in getting Congress to finance rapid-treatment centers to control and prevent sexually transmitted diseases, defining the basic epidemiological principles of tracing sexual contacts of infected individuals so they could be treated, and requiring syphilis tests for marriage license applications. He championed the environment, truth in radio drug advertising and the World Health Organization.

All of which explains why an award was named for Parran. Meanwhile, the reasons the honor is so outrageous were kept secret for decades. The Guatemala experiments (1946-48) remained secret until research by Wellesley College professor Susan Reverby prompted investigation by U.S. health officials in 2010.

Altman explains:

"The two medical scandals revolved around experiments that are now universally regarded as shocking. Dr. Parran did not perform either study. Though national experts approved them both, he presided over them, strongly supported them and followed their progress in medical journals.

"One, the Tuskegee study, observed the course of untreated syphilis among hundreds of men who were infected naturally in Alabama. The study began in 1932, and it was not halted by the United States Public Health Service until 1972, after a whistle-blower complained that infected patients in the study were not given penicillin, the standard therapy after World War II. Some participants died of the disease, some of their sexual partners contracted it, and some children were born infected.

"In the other study, even more odious, American researchers from 1946 to 1948 intentionally exposed more than 1,300 Guatemalans, including many in mental institutions, to syphilis, gonorrhea and chancroid. Although Dr. Parran had said that consent was needed before individuals participated in experiments, no evidence exists that the American researchers sought such permission. Dr. Parran told a contemporary that the Guatemalan experiments could not have been conducted in the United States."

I’m no medical historian, and my knowledge of medical ethics is largely self-taught and goes back only a few years. And yet, I’ve devoted a significant amount of time to volunteer work with a group of citizens in the Boston area who are passionate about both the practitioners and beneficiaries of medical science, and about considering the standards medical professionals are held to, and hold themselves to. And chief among my lessons learned is that many in the medical profession and the public they serve have pitifully and dangerously short memories.

And so the lessons of Dr. Parran should be remembered, not erased.

Altman writes:

"Paul A. Lombardo of the Georgia State University College of Law, who advised the presidential commission that studied the Guatemala affair, offers a less drastic measure: rewriting the citation to include 'an account of Dr. Parran’s involvement in two of the most disgraceful episodes in the annals of research ethics.' 

"Such a step would remind future generations that even scientists’ most glittering successes are no guarantee against ethical malfeasance. 'Myth would be balanced with a touch of reality,' Professor Lombardo wrote."

Parran got his medical degree from Georgetown University in 1915, a time of remarkable transformation in medicine. Medical schools were only beginning to demand high academic and training standards among faculty and students (the field of medical ethics was still decades away). Eugenic sterilization was being performed in some American hospitals -- inspiring Nazi practices a short time later. At the time, endowments for medical schools were miniscule, a fraction of those for seminaries, which had long attracted the best and brightest.

The Community Ethics Committee, sponsor of this blog, studied the Guatemala human experiments for a report submitted to the presidential commission. “More than any other topic the Committee has addressed to date,” we wrote, “the issues raised by clinical trials in resource-poor countries, especially as illustrated by the graphic and troubling abuses of the 1940s Guatemalan study, brought out the differences of our cultural sensibilities and the resultant trust and distrust of institutional medical systems.”

The Committee’s study is titled Advocacy for Research Participants. Our primary recommendation was that “empowered, informed and truly independent Participant Advocates be assigned to research participants and that those advocates stay with individual participants from the initiation of the informed consent process, through the clinical trial, and for follow-up after the trial closes.”

Additionally, we wrote, “given the pervasive nature of clinical trials in current medical practice, we highly recommend that medical schools require a Course in Medical and Research Ethics and clinical trial protocols.”

The study is available here.

Especially among vulnerable and marginalized communities, trust in the medical profession is fragile, and Tuskegee and Guatemala are part of the reason. Trust won’t improve without memory of the roots of the distrust.

So the life and work of Thomas Parran Jr. is worth remembering, annually, in all its ambiguity. 

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