retinopathy of prematurity.org
Baby-harming medical research
about retinopathy of prematurity
by H. Peter Aleff, 2005
Chapter 2: Oxygen withholding
2.1: The eugenic roots of the big bogus study about preemie blinding and oxygen
Already the discoverer of ROP, Dr. Theodore Terry, had suggested from 1943 on that the most likely cause for this disease of the babies’ most light-sensitive organ must be light. However, Terry died in 1946, and the other ophthalmologists who took over the discussion of the new epidemic had very different ideas. One of the most prominent among them, Dr. Algernon B. Reese, wrote a stack of lengthy and learned-looking articles to lump ROP together with several unrelated eye conditions. He then used this confusion to assert at a professional meeting in November, 1945, together with his co-author Dr. Frank Payne, that this often only post-natally observed damage had a prenatal and congenital origin.
Some of Reese’s other ideas were similarly ill-advised, as when he performed and recommended experiments of treating preemies by irradiating their ROP-damaged eyes with X-rays, despite the by then well established knowledge that X-raying fetuses in utero usually caused them to be born with maldeveloped retinae.
Despite his lack of judgment and reckless lack of concern for the safety of patients, Reese was an influential medical opinion leader. He was consulting ophthalmologist to many major hospitals in the New York area, frequent honor lecturer, recipient of several distinguished awards and medals, past chairman of the eye sections at both the New York Academy of Medicine and the New York State and County Medical Society, President of the New York Ophthalmological Society, a few years later also President of the American Academy of Ophthalmology and Otolaryngology as well as chairman of its Council Committee and Subcommittee in charge of "Executive, Research and Finance" and also of its Judicial Committee.
These positions of professional power may have enhanced the weight of Reese's opinions among his peers, but he would not have risen so high if he had not been in tune with theirs. Despite his apparently central role in the then medical establishment’s fake approach to ROP, he was not some maverick lone ranger who deceived his audience. He rather appears to have represented a broad consensus shared by many members of his profession. When one of his like-minded colleagues articulated his proposal for dealing with the epidemic of allegedly congenital eye damage by eliminating the "defective" victims, none of those audience members found anything wrong with that proposed Herodian-scale infanticide, at least according to the published record of that discussion.
That discussion followed Reese's reading of a lengthy technical paper about the clinical development of retrolental fibroplasia (as ROP was then still called) at the June 23, 1948, meeting of the American Medical Association’s Section on Ophthalmology. In that paper he had again tried to show with contrived evidence that ROP was a congenital defect present in the embryonic stage.
The Abstract of Discussion was written by a Dr. Brittain F. Payne who hailed also from New York and would become in 1959, together with Dr. Reese, one of the founding members of the Pan-American Ophthalmological Foundation. He may be the same Frank Payne who had co-authored with Reese the earlier cited 1945 presentation on the same topic with the same conclusion. Payne had been asked to comment on Reese’s just presented paper, and he clearly shared Reese’s views about the congenital nature of ROP. He blamed "defective germ plasm" as playing an important role in the etiology of the eye damage, and he proposed to solve the problem by not preserving the “defective persons” at risk for it.
Here is how Payne concluded his rendering of that discussion, as edited and published by Reese who was then also the editor of the American Medical Association’s “Archives of Ophthalmology” where he printed his paper as the lead article followed by that “Abstract of Discussion” in the May 1949 issue:
Payne's recommendation against preserving potential “defectives” which is now shocking to non-medical lay persons, as well as his suggestion to prevent the disease “by selection of parents”, reveal that he and his audience of mostly ophthalmologists continued to believe in the pseudo-science of eugenics which had been fashionable during their study years. His unwarranted association of the blindness with the entirely unrelated dementia is another telltale sign for the survival of that belief since it had been a favorite tactic of the earlier eugenics crusaders to label anyone they deemed undesirable as “feebleminded” or "demented".
We need therefore to examine Payne's euthanasia proposal against preemies in the context of the eugenics movement which had shaped much medical thinking during the first half of the twentieth century and reverberates even today in the writings of leading bioethicists. For instance, the Harvard-educated and highly influential Ezekiel Emanuel claimed in the October, 2014, issue of The Atlantic that he hoped to die at 75 because this deadline "forces each of us to ask whether our consumption is worth our contribution".[6A] This is an undisguised survival of the "useless eater" concept dear to the earlier eugenicists which led to the euthanasia program of the Nazis.
The sordid details of the eugenic movement have long remained underreported. Its often unctuously proclaimed "never again" lessons are still underappreciated, yet already becoming forgotten. Fortunately, some recent books are now shining some much needed light on this dark and willfully hidden aspect of medical history.
Particularly relevant among these books are the "Society and Medicine" researcher Martin S. Pernick's fascinating discussion in "The Black Stork: Eugenics and the Death of 'Defective' Babies in American Medicine and Motion Pictures since 1915" about the infanticide-promoting 1916 movie of that name and the public portrayal of eugenic ideas. Even more important and wide-ranging is the industrial-strength investigative journalist Edwin Black's comprehensive and eye-opening history of the "War against the Weak: Eugenics and America's Campaign to Create a Master Race". Much of the information about the eugenics movement presented here is based on these well documented accounts.
The concept of eugenics started out as a lofty though Laputan ideal but turned soon into a nightmare of arrogance run amok. It horribly harmed many people during the first half of the twentieth century and contaminated the medical doctrine with some falsehoods so deeply enshrined that they continue to injure patients today.
Originally, when Charles Darwin's cousin Francis J. Galton coined in 1883 England the term "eugenics" by combining the Greek words for "well" and "born", his goal was to enhance desirable traits and talents by promoting and facilitating marriages between partners with such superior qualities. This pursuit became later known as "positive eugenics" to distinguish it from the "negative eugenics" which some of his followers developed, mainly in the United States, in attempts to forcibly abolish perceived traits they deemed undesirable. The goal of these negative eugenicists was to eliminate the "inferior" and the "defectives".
The American negative eugenicists used as their principal tools segregation and sterilization, and they worked towards the prohibition of marriage between people they judged likely to have "unfit" offspring. However, as Pernick reports, many of them advocated also, from at least the beginning of the twentieth century on, the killing of "hereditary defectives", particularly the withholding of life-saving medical treatment from "physically defective infants" in cases when, in the doctor's opinion, the treatment "can only save the life by making it a daily and hopeless misery".
This withholding of life-saving treatment from babies with birth defects or handicaps had long been practiced tacitly by many doctors, but it became widely known and openly debated in 1915 when a Chicago surgeon began to actively publicize his refusals to operate on several impaired babies. The headlines he made sometimes even crowded out news about the then raging World War One. However, although his actions seemed to have broken laws then on the books, he was never prosecuted, and the public was generally supportive.
Many prominent Americans were in favor of letting impaired babies die -- not only the then numerous promoters of eugenics but even the well-known advocate for the disabled, Helen Keller, and the Catholic cardinal of Baltimore who held that Catholic law considered it permissible, at least back then, to withhold such "extraordinary" interventions as surgery on a newborn.
Pernick discovered that this treatment-refusing surgeon even wrote and starred in a feature movie titled "The Black Stork" about such a case: a disabled baby is born to a couple despite their doctor's (and a grandfather's ghost's) warnings about an unspecified inheritable disease the husband carried. The doctor refuses to perform the surgery that would save the baby's life, and the mother is torn until God reveals to her a dismal vision of the child's future life in "pain, madness, and crime". This prospect makes her accept the doctor's wise judgment, "and the baby's soul leaps into the arms of a waiting Jesus".
This infanticide-promoting movie was shown commercially from 1916 on, renamed in 1918 "Are You Fit to Marry?", and re-released with minor changes in 1927 for exhibition in small theaters and road shows until "perhaps as late as 1942".
However, the initially vigorous public debate about the real-life infanticide died down after a couple of years. Many doctors objected to the publicity about this then widespread practice although often not at all to the practice itself, and Pernick says that the disappearance of that debate "reflected a growing consensus among social, medical, and media leaders that the topic itself was unfit to discuss in public" .
In this intellectual climate where the secret killing of "defectives" was seen as a tacit medical right and sometimes even duty, blindness became the principal target of the defect hunters. Black tells this particularly Kafkaesque subplot of the chilling eugenics story in the "Blinded" chapter of his "War against the Weak" and explains there why "blindness prevention rose to the top of that movement's agenda in the 1920s":
This focus on blindness was further concentrated by the fact that in 1918, Dr. Lucien Howe, a celebrated ophthalmologist and president of the American Ophthalmologic Society, became the president of the Eugenics Research Association. Howe had won prestigious awards such as a gold medal from the National Committee for the Prevention of Blindness, and the American Ophthalmological Society created in his honor the still active Lucien Howe Prize at the University of Buffalo to recognize lifetime achievements in his field.
Howe remained an ardent activist of the eugenics movement until his death in 1928 and combined this work with his professional interest in anything related to blindness, a perfect example for the saying that to him who has a hammer everything looks like a nail. He was the driving force behind "The Howe Law" in New York and soon in many other states which made it mandatory to instill silver nitrate drops into every newborn's eyes as a disinfectant to prevent their blindness.
These laws indiscriminately forced eye-irritating and vision-blurring medication on each baby whether s/he needed that treatment or not. They were based on the theory that it was impossible for the doctor to know which mothers might be infected with gonorrhea and so put their babies at risk. The message this conveyed to the parents was that they were polluted and that their baby needed to have his purity restored by medical science and technology in that one-size-fits-all ritual.
Howe brought the same arrogant attitude of medical superiority and disdain for individual patients to his plans of eradicating blindness in the general population. According to Black, he
To do so, Howe needed to create the impression that hereditary blindness was a major problem. He estimated therefore a substantial "cost of blindness to the nation", then doubled that figure arbitrarily and implied that hereditary cases were somehow responsible for all of his doctored total. He built this bogus case although he knew that heredity accounted only for at most about seven per cent of all blindness, and also that its effects were rapidly diminishing as corrective lenses and other advances became available.
Based on this knowingly false impression, Howe began to push for legislation to either sterilize or incarcerate all people with impaired vision as well as all members of their extended families to prevent any of them from having children who might become blind. He argued that all blind people were burdens to the taxpayers, and also that
Then he asked, with an arrogance that made him view the members of his profession as the ultimate arbiters about the fates of their patients:
His answer was "that authorities wait to discover a blind person, and then go back to get the rest of his family".
Howe's Eugenic Research Office and the American Medical Association's Section subcommittee proposed in 1921 a draft legislation that targeted not just blindness, hereditary or not, but anyone with any kind of eye defect, such as people who needed to wear glasses, and any family that included someone with such imperfect vision. Any taxpayer could object to the marriage of such persons or their blood relatives; the assessments would be made by one ophthalmologist and one eugenicist, or, in the version introduced in April of that year by a New York State senator, by just "one person who could fulfill both roles".
The reaction to this proposal was divided among eugenicists, with at least half of them opposed, but the ophthalmologists among those polled voted 88 to 40 for it. Some of them even sent in family trees from their patients, despite their solemn obligation to preserve those patients' confidentiality, as emphasized in their Hippocratic Oath. This reaction from his colleagues encouraged Howe to persevere even when his proposed law did not pass that year or the next. He remained determined to "hunt" those with vision problems and to imprison them as "protection against future defectives". He had a similar bill reintroduced in 1926 but was unable to offer any definition for the "blindness" to be so harshly punished, and that law was not enacted either.
However, by 1931 the American Eugenics Society had convinced 27 U.S. states to enact compulsory sterilization laws against the “feebleminded”, insane, epileptic, “moral perverts” and similar ill-defined groups, several years before Germany, as well as Switzerland, Denmark, Norway, and Sweden passed similar laws. And blindness remained a major target. Even when the American Neurological Association exposed in a 1935 report that many of the alleged reasons for sterilizing did not pass any scientific smell test, its authors still held that vision-blurring and partially blinding hereditary optic atrophy was among the leading conditions on their list that justified mandatory sterilization.
Meanwhile, in 1928, Howe helped found the Howe Laboratory of Ophthalmology as a joint venture of Mass Eye and Ear and the Harvard Medical School to promote ophthalmic research and education with a major emphasis on ophthalmic genetics, a mission that reflected Howe's interest in blindness as a model case for eugenics legislation..
The founding of this lab at Harvard was no accident because that University was then, and remained for a long time to come, a hotbed for the teaching of eugenics and its elitist conceit that a few specialists in their allegedly scientific caste should have the right to determine the fates of any people whom they deemed inferior and unworthy.
Harvard faculty and alumni were the undisputed leaders not only for most of the compulsory sterilization laws that were enacted in ultimately 30 American states during the first four decades of the 20th century. They were also instrumental in helping the Nazis establish their race-based agenda in Germany and to provide it with a fig leaf of scientific appearance.
The independent researcher A. E. Samaan documented in his 2013 essay "Harvard and the Holocaust" some among these results of Harvard's hybris:
"1.) One Harvard graduate sat in as a judge in
Hitler's eugenic courts.
As one might expect in such an environment, that lab remained infested with negative eugenics of the worst kind even a decade after Howe's death. As late as at the end of 1938, several weeks after the Nazis' infamous "Crystal Night" which marked the official beginning of public pogroms against Jews in Germany, a Howe researcher traveled to the "swastika-bedecked" Institute for Hereditary Biology and Racial Hygiene in Frankfurt to visit one of the main "scientific" advocates for the Nazi's eugenic and race-based killing programs. Black says that
That Howe researcher's German host was also the employer of the infamous Dr. Josef Mengele whom he later sent to Auschwitz to perform ghastly experiments on helpless inmates. Mengele's duties there would also include the gathering of specimens from victims murdered specially for that Institute's collections and to supply materials for its eugenic "research".
The climate of rabid eugenics at this Howe-founded Harvard training facility seems likely to have influenced many researchers in ophthalmology because the Howe Lab's home page on the Harvard website still stated in 2006 that
The eye-researchers trained there seem to have clung to these eugenic ideas even in the post-war years when most others had long repudiated them in disgust. Although the concept of eliminating the “defectives” and “feebleminded” by euthanasia had gained mainstream U.S. medical acceptance in the decades before the second world war, most lay people stopped advocating such negative eugenics when they learned about the atrocities to which that doctrine had led in Nazi Germany.
Robert N. Proctor, Associate Professor of History at Penn State University, mentioned this change in his contribution to a book on Human Rights in Human Experimentation:
Unfortunately, those reports about the mass killings in Germany do not appear to have changed the minds of the leading American postwar researchers in ophthalmology. The fact that Payne and Reese could still openly propose their euthanasia program against preemies in a 1948 meeting of ophthalmologists and then print that proposal in 1949 in one of the most authoritative medical journals of the U.S. shows that Reese and many of his peers still clung to the eugenics-inspired opinions which Howe and others had promoted.
The leading doctors in that 1948 audience had received their medical education during the 1920s and 1930s when eugenics was widely regarded as cutting-edge medical progress and when many medical scientists actively supported its stated aim of improving the human gene pool.
Also, many American doctors had augmented their education in Europe, particularly in the German-speaking countries which were then highly reputed for their advanced medical sciences. Reese, for instance, had studied in Vienna in 1921, right after his graduation from Harvard, and again in 1925-26, an indication that he must have liked what he found there.
Like American medical circles, those in Vienna were at that time strongly permeated with the belief in “scientific” eugenics. Even those physicians allied with the Austrian Social Democrats proposed that abortion decisions should be made only on “medical, social, and eugenic” grounds. In other words, this belief was so dominant there that even these left-leaning doctors accepted it as a matter of course although it totally contradicted their own platform: one of the most prominent traits of the eugenics movement was its opposition to any social legislation intended to aid the poor, "arguing that this 'social net' prevented the operation of natural selection".
And preemies were obvious victims in this "War against the Weak". On both sides of the Atlantic, physicians had long been accustomed to refer to premature babies as “weaklings” and to dismiss them as products of a hereditary “diseased maternal environment” who would suffer from “atrophy and wasting” if they survived at all.
Medical students such as Reese absorbed those teachings and opinions as part of their education and then continued to think and speak the way their distinguished professors had taught them. This is often the case because doctors are required to follow their medical authorities and therefore tend to stick with the ideas they internalized during their formative years, particularly when these are backed by the unquestioned prestige of institutions such as Harvard.
One medical author wrote, for instance, that “the patterns of thought and behavior [of medical leaders] are usually fixed before leadership arrives”, and many others complained similarly about this frequent lack of mental flexibility in their profession.
For instance, the medical historian Howard W. Haggard stated:
This persistence of even bad teachings may explain why the eminent British ophthalmologist, Sir Stewart Duke-Elder (1898-1978), kept citing in 1962 some of the worst and long discredited pre-war writers on eugenics, including some Nazi authors, throughout the "Heredity" section of his monumental multi-volume textbook "System of Ophthalmology", and why he continued to advocate that
That same inertia of thought and reverence for lofty credentials among some medical doctors may also be the reason why, as late as 1977, the Harvard-educated Dr. Reese continued to be cited in the professional literature as an "impressive authority".
Payne's above-cited recommendation to "not preserve the defectives" appears to have been the last public mention of that mass infanticide proposal. Even the diehard eugenicists in his and Reese's group realized that forcible euthanasia would now outrage the public and could only be performed in secret. This matches the general description of U.S. post-war eugenics in the Wikipedia which says that
Reese and Payne and their audience clearly belonged to that crypto group because Payne's recommendation to blame “fate” for the deaths to be expected from his euthanasia proposal, and Reese's quote marks around that word, suggested clearly that this weeding out of the potential ROP victims should be disguised as natural deaths.
As shocking as this deadly deception may appear to you, the medical murder of "defective"-looking babies was then still as commonplace as at the time of "The Black Stork". In an article about the introduction of the Apgar score for rating the condition of newborn babies, Atul Gawande at the Harvard Medical School describes how Dr. Virginia Apgar, the inventor of that score which she published in 1953,
This medical attitude continues today. Doctors in Holland and New Zealand can legally decide that continued existence is "of no benefit" to some sick babies and therefore withdraw treatment or actively kill them. In England, the Royal College of Obstetricians and Gynecologists asked the Nuffield Council on Bioethics for a discussion over whether "deliberate intervention" to cause the death of "severely disabled" babies should be legalized, and "a professor of bioethics at the University of Manchester said it was not a question of whether or not these decisions were taken - as they already were through withdrawing treatment - but how to take them in the most humane way."
And in the U.S., the debate about the preservation of human babies is so exclusively centered on the unborn, from the fetus all the way back to embryonic stem cells, that the routine medical euthanasia against real live babies by oxygen-withholding in the country's intensive care nurseries gets consistently ignored.
This long reigning and deeply entrenched medical habit of secret infanticide may explain why no doctor questioned the ethics of routinely withholding life-saving treatment when Reese and Payne proposed it. Indeed, although these had published their incitation to systematic murder in one of the flagship journals of the American Medical Association, not one writer in any of the major English-language clinical journals of those years took issue with their recommendation to not preserve the “defectives” who might otherwise grow up blind.
The road was therefore clear for the doctors in Reese's circle to implement their "do not preserve" recommendation for preemies at risk for ROP, and the means was self-evident: The most powerful and virtually only tool the nursery doctors had at that time to “zealously preserve” the weakest babies was to enrich their breathing air with supplementary oxygen. Taking away that life-saving gas would keep those preemies from surviving to grow up blind and would allow their secretly baby-killing doctors to unctuously blame the quote-marked “fate” for their deaths.
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