Dr. Maren Grainger-Monsen in San Francisco Chronicle

Maren Grainger-Monsen is amazing. Her film "Hold Your Breath" is the story of the care give to Afghan immigrant Mohammed Kochi. But that doesn't begin to get at the depth of the film, by bioethicist and Stanford "bioethics in film" program director Grainger-Monsen. I met Maren when she and I were figuring out how our respective Greenwall Foundation-funded projects would overlap. From my point of view, anything anybody else can do in bioethics and film, Maren can (and will) do better. She's just amazing.

Maren's Breath film left a roomful of stodgy bioethics professors weeping (well, it did me anyway), and from the tone of this SF Chronicle review she will likely see Breath make its way to some major awards in the non-fiction independent film awards (whatever those are).

She is well into a big program that has developed several films and other products and among her films are some that are used by most major medical schools in the English-speaking world. Here's the piece on her work in the SFChron.

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The SFChron staff writer includes in his article a strange misunderstanding of the Tuskegee Study:
"...the U.S. government-funded Tuskegee syphilis study, where black patients were the control group and did not receive treatment, even when it was clear that penicillin worked."
It appears that the writer thinks that other patients (whites?) were in a treatment group or even that penicillin was a study drug available to the experimental group. The legacy of the study is bad enough without this kind of misunderstanding.

The SFChron staff writer does, indeed, fail to properly describe the design of the Tuskegee study. Perhaps worse is the repitition of the claim that subjects of the study "did not receive treatment, even when it was clear that penicillin worked."
Maybe the writer "learned" this from the many bioethicists who have promulgated the story. Apparently these bioethicists aren't able, or inclined to use critical historical methods to investigate this bit of the origins myth of their own field... I ask, to _whom_ was it clear that penicillin "worked?" And _when_ did this become "clear?"
Penicillin was indeed withheld from study subjects, and some were discouraged from seeking treatment elsewhere. What is questionable is the claim that the PHS personnel knew, or should have known, that penicillin is (somewhat) effective in treating late stage syphilis. My main reason for questioning this bit of the Tuskegee myth is that the DHEW issued a report in 1972, just months before the Tuskegee study was exposed, calling for research to determine the role of penicillin in the treatment of late stage syphilis. While stating unequivocally that penicillin is indicated for the treatment of primary and secondary syphilis, the report concluded that its efficacy for late latent syphilis was still unknown in 1972. The reference for the report is:
Report of the National Commission on Venereal Disease to the Assistant Secretary for Health and Scientific Affairs. Washington DC: US Dept of Health, Education, and Welfare; 1972. Publication DHEW (HSM) 72-8125.
Given the still common practice among health care professionals of relying on such reports to determine professional practice standards, I think we should be cautious about condemning the PHS doctors for withholding penicillin from the Tuskegee cohort.
There's still plenty else about the Tuskegee study that warrants ethical reproach. But "getting the facts right" should be just as important for bioethicists as it is for journalists.

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