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Hiding in Plain Sight: Public Health, Eugenics, and COVID-19

By Laura I Appleman

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Citation

Appleman L. Hiding in plain sight: public health, eugenics, and COVID-19​. Harvard Public Health Review. 2021; 30.

Introduction

Far from being a shameful moment of our past, eugenic philosophy is alive and well in the twenty-first century. Nowhere has this been more apparent than in our response to the current public health crisis. The COVID-19 pandemic has exposed the viral nature of eugenic philosophy, which has continued to guide U.S. treatment of the captive and vulnerable for over 100 years. The long tail of eugenics informs our choices over those we institutionalize, detain, and sequester in long-term care and group homes.

 

Although we stopped formally espousing eugenics – a set of beliefs and practices focused on culling the “unfit” to improve humanity’s breeding stock – after its embrace by Nazi powers, its philosophy has continued to thrive. Despite the horrors of the Tuskegee Institute syphilis experiment, our medical community routinely conducts human medical experiments on those who are unable to fully consent, such as nursing home inhabitants, patients in mental institutions and disabled residents of long-term care homes. The recent allegations of sterilizing immigrant women at the border without their consent or knowledge is simply the latest example of American eugenics programs attempting to halt the reproductive abilities of the poor, the disabled and those convicted of crimes.

 

At the height of the spring COVID crisis, for example, New York State directed hospitals to release still contagious COVID-19 patients from hospitals into nursing homes in order to open hospital beds, thereby infecting vulnerable residents. In addition, both federal and state governments simply failed to provide proper PPE and sanitation supplies to nursing homes, long-term care homes and institutions for individuals with intellectual and developmental disabilities, putting numerous high-risk individuals in jeopardy of contracting and becoming seriously ill with the coronavirus.

 

Moreover, a few states have experimented on patients by trying unproven COVID-19 treatments on nursing home residents without proper consent. A Pennsylvania veteran’s home prescribed hydroxychloroquine to residents, whether they tested positive for the virus or not. The veterans’ home neither obtained informed consent from the patients or even told their families. A Texas nursing home did likewise, proceeding without informed consent or proper safety protocols. Experimenting with unproven medical treatment on non-consenting patients violates every protocol on the ethical performance of medical experimentation.

 

It should be no surprise that our response to COVID-19 uses this familiar blueprint with predictable consequences for the captive and vulnerable who are pushed to the side, ignored or sacrificed for the “greater good.” We have largely abandoned those populations living in long-term care homes, disregarding or making worse the rising toll of illness and death in nursing homes and long-term care homes.  And we have almost entirely ignored the needs of the individuals in psychiatric institutions and the people living in facilities for IDD.

 

Part I of this Essay maps out the hidden role of eugenic philosophy in both past and present approaches to law and public health, detailing its strong influence throughout the past 100 years. Part II scrutinizes our reaction to COVID, exposing the neglect and discrimination against those populations we still view as “lesser” and “unworthy.” In this Part, I look specifically at nursing home residents, institutionalized patients, and those individuals residing in long-term care for IDD/DD. Part III advocates for increased educational efforts to  teach the true history of eugenics. Finally, the Essay concludes with a call to scrutinize our medical and public health practices for the taint of eugenic thinking.

 

We will undoubtedly learn many painful lessons through the course of this pandemic.  It is well past time to rip up our outdated eugenic blueprint, and create a new approach that recognizes the inherent humanity in all individuals. Eradicating the stain of eugenics may take another generation, but there is no better time than the present.

Part I

America’s century-old philosophy of eugenics, although nominally-discredited,[i] has shaped our COVID-19 response in many ways. Eugenic philosophy was a global scientific and social movement focusing on the manipulation of the racial and ethnic stock to improve society.[ii]  In other words, eugenic philosophy is a system of thought “influenced by core beliefs that many of the worst social problems facing America could be solved by segregating, sterilizing, or even eliminating the physically, mentally, and morally disabled.”[iii]

 

Our COVID-19 policies have helped reinforce this philosophy by creating a literal underclass of the “unfit” and “unvalued,” whose lives are treated as less valuable. Our eugenics-based approach to the pandemic is a reflection of our long-held but   little-discussed eugenics beliefs, established in the late 19th century and still endemic today. The remnants of eugenic psuedoscience repeatedly surface in modern public health and medical practice, most evident in the treatment of disfavored populations.[iv]

 

Despite eugenics’ deep influence on public health and medicine, there has been little focus on the ties between public health and eugenics, with a few important exceptions.[v] This Essay seeks to highlight and explore such connections, and demonstrate how not only has our public health policy been shaped by eugenic philosophy in the past, but is also shaped by it today, during the COVID-19 pandemic.

 

The standard histories of American law, medicine, and public health tend to give short shrift to the role of eugenics.[vi] For example, Buck v. Bell,[vii] where the Supreme Court upheld a public health-focused state statute permitting the compulsory sterilization of the unfit, has never been overruled by the Supreme Court, and continues to operate as legal precedent.[viii]  Indeed, Buck v. Bell was cited as precedent as recently as 2001.[ix]   Following Buck v. Bell, 32 states passed eugenic sterilization laws in the first few decades of the 20th century.[x]   Innumerable human medical experiments were performed upon the disabled, the incarcerated, and the aged, frequently funded by the federal government.[xi] The quarantining actions of the U.S. Public Health Service in the early part of the 20th century were openly based on eugenic, nativist concerns over rising amounts of newcomers across the southern border.[xii] We have long since given up espousing the philosophy of eugenics. And yet the pseudoscience of eugenics has deep and lasting roots within the inner workings of law, medicine, and public health.[xiii]

 

Until quite recently, little attention was paid to the role of eugenic thinking in landmark scientific   and medical discoveries, in the imprisonment and detention of the disabled and convicted, in the ongoing sterilization of incarcerated women, and in the cavalier continuance of human medical experimentation on the captive and the vulnerable.  This Essay seeks to expose the hidden motivations behind our poor treatment of disabled, captive, and vulnerable populations during the time of COVID. In doing so, I will highlight how our long-standing legacy of eugenics has heavily influenced the federal, state and local response to the pandemic, none of it to our credit. Although the pandemic has shone a spotlight on the long-lasting power of eugenic philosophy, eugenic practices have affected these populations for over a century.

 

Standard American history gives short shrift to the powerful role of eugenics in locking up and neglecting the elderly and people with physical and mental disabilities. Indeed, our checkered past of human subject experimentation is tangled with our history of imprisonment. Although embarrassing to recall, “historians have shown that eugenics made a massive and lasting influence on American law and society and on criminal justice in particular.”[xiv] Eugenic philosophy has guided our past decisions to detain and incarcerate individuals with psychiatric disabilities, those with developmental and physical disabilities, and the “socially undesirable.”[xv] From the very beginning of the United States, segregation and detention have been used to control those on the margins: the poor (in almshouses, workhouses, and ghettos), minorities (in convict labor farms and correctional institutions), and those who are disabled (in cages, asylums, and hospitals).[xvi] Eugenic philosophy provided the blueprint for these decisions, and its long tail still shapes the contours of much of the modern regulatory state.[xvii]

 

Theories of eugenics began to circulate in the mid 19th century, and reached full American  flower during the Progressive Era.[xviii] Eugenic theory was closely intertwined with the late nineteenth-century idea that social problems, including insanity, dependency, poverty, and disability, were fundamentally individual and moral in nature.[xix] Following the Civil War, the burgeoning field of hereditary science provided Americans an easy way to stratify and inculcate on the basis of  class and race. Hereditary differentiation quickly became a means to socially control those considered “inferior”[xx] and deserving of fewer resources.[xxi] In this way, scientific racism and eugenics became fundamental in supporting certain societal ordering—one that valorized certain races, ethnicities, and genetic fitness—as natural and inevitable.[xxii] Thus eugenics functioned simultaneously as “a scientific and a social movement.”[xxiii]

 

By the start of the Progressive Era, various legal, sociological, and scientific eugenic theories flourished, largely focused on dividing the “fit” from the “unfit.”[xxiv] The common thread?  Widespread societal assumptions about the appropriate treatment for those individuals categorized as “unfit,” “undesirable,” or “unemployable.”[xxv] Those considered “inferior” because of  disability, mental illness,  or congenital illness  were viewed by the public as a continuing “threat to the vitality of the nation.”[xxvi] The very existence of these “unfit” individuals posed a threat because they would not only cost money to support, but also might spread their “degenerate” hereditary traits through reproduction, weakening the American stock.

 

In response, policy makers used eugenics  to help distinguish and separate the different types of inferior persons, to better control and contain, by imposing involuntary custodial care (the asylum, the work farm, the prison), upon certain undesirable segments of society.[xxvii] This was to shrink the costs of supporting the mentally & physically disabled.[xxviii] Public health and eugenics joined together in working to segregate “unfit” individuals from everyone else, isolating them in  various institutions, asylums, work farms, camps, and other detainment so they could neither spread disease or breed.[xxix]

 

State policies, and legal proceedings codified eugenic thinking, and helped   crystallize such beliefs.[xxx] Indeed, as Lombardo explains, the start of the 20th century saw “three fields of scientific and medical study emerge[] that promised to provide new tools with which to understand societal problems and improve the lives of citizens: public health, genetics, and eugenics.”[xxxi]  In addition, both public health and eugenics focused on population-based solutions for health problems, rather than an individual lens.[xxxii]

 

Thus one shared goal of both public health officials and eugenicists was achieving population health.[xxxiii]  This was illustrated by the many health laws passed in the early 20th century that were premised on eugenic philosophy.[xxxiv] Various state statutes forbid the issuance of marriage licenses to the “defective,” to reduce the number of children born with physical, mental, or moral abnormalities.[xxxv]  Similarly, medical testing before the granting of marriage licenses, particularly for syphilis, was required by many states, known as “the eugenic marriage laws.”[xxxvi]  State sterilization laws and anti-miscegenation laws soon followed suit.[xxxvii]  In addition,  the Ellis Island public health screenings for “feeblemindedness” and intelligence directly relied on training provided by Charles Davenport’s Eugenics Record Office at Cold Spring Harbor, NY.[xxxviii]   This type of screening and thinking led ultimately to the 1924 Immigration Act, which tightened the numbers of Jews and Italians entering the country.[xxxix] 

 

Finally, the health screenings required of hopeful immigrants to the United States, performed by Public Health Service Officers, had a specific ideology and regulations for inspecting, admitting, or excluding aliens, with different standards and concerns for each arriving immigrant group.[xl]  PHS officers claimed they could not only read the race of an immigrant at first glance, but also foretell how racial and ethnic variations would manifest disease.[xli]  These screenings were based on the federal quarantine law of 1893, which allowed the U.S. to station Public Health Service officers both in American and abroad  to ensure that no immigrants with mental or physical diseases were allowed in the country.[xlii]  PHS officials envisioned their mission as one defending the United States from both disease and undesirable immigrants.[xliii]

 

The spread of eugenic thinking also spurred a redefinition of disabilities, both mental and physical, transforming the “unfit” from community outsiders into societal dangers.[xliv] The fear of a “rising tide of feeblemindedness,”[xlv] spawned from indiscriminate “degenerate” breeding, was entangled with the fear that the national intelligence of the Anglo-American world was in decline.[xlvi] Simultaneously, the fear of a growing population of disabled individuals increased, for they would supposedly bankrupt and overtake local communities.[xlvii] As a result, more “permanent” solutions were sought to stem the flood, including the establishment of asylums, sterilization, and euthanasia, to segregate the “defective” from the flow of community life.[xlviii]

 

Such imprisonment of the vulnerable, whether through asylum or institution, were then effectively combined with widespread sterilization schemes.[xlix] Sterilization intended to eradicate the inherited aspects of mental illness, degenerate criminality, and intellectual and developmental disability.[l] Isolation and segregation, combined with a rigorous sterilization regime, would help “annihilate the hideous serpent of hopelessly vicious protoplasm.”[li] Once appropriately disposed of, these “inferior” individuals would no longer be a bother to society, and their genes would eventually die out.[lii]

 

This type of eugenic thinking strongly influenced   Progressive era public health policies.[liii]  The beginning collection of data, along with advances in the field of statistics, were used by public health officials to attempt to control disease and track health.[liv]  Both public health and eugenics felt that preventing disease spread was more efficient than finding cures, whether that was a vaccine (public health) or sterilization to prevent inferior reproduction (eugenicists).[lv]  Public health physicians also adopted eugenics as a practical way to apply the insights of medicine.[lvi]

 

Ultimately, the public health movement emphasized population-based solutions for health problems, and most practitioners agreed that prevention of social problems was a “necessary condition for social progress.”[lvii]  The passage of eugenics based public health laws–such as denial of marriage certificates to “defectives” and mandatory sterilization laws–exemplified this cooperation.[lviii]  Further, the parallel growth  of both public health procedures and eugenic beliefs created powerful links among science, medicine, public health, and eugenics.[lix]  For the first four decades of the 20th century, high ranking officials in the PHS and in public health generally were enthusiastic supporters of eugenic beliefs.[lx]

 

As I have contended elsewhere, there is a long but little explored history of eugenics-based abuse and discrimination that has manifested itself in medical testing and treatment.[lxi]  Like other forms of eugenics, human medical experimentation upon captive, vulnerable subjects has quietly continued, particularly on the disabled, the poor, the mentally ill, and the incarcerated.[lxii]  Although most believe that research on captive populations ended with the 1970 Tuskegee syphilis study, the practice of human medical experimentation has continued through the late twentieth and early twenty-first century,[lxiii] including during COVID-19.

 

Our nation’s practice of experimenting on the captive and vulnerable persists today, whether on those in long-term care, the mentally ill, and the institutionalized.[lxiv] Captive, vulnerable individuals have continued to prove irresistible to doctors and researchers hoping to perform human subject research.[lxv]

 

Another group of captive, vulnerable people used as medical experiments were those individuals in state institutions or nursing homes.  There is a long and dishonorable history of performing medical experiments—including the testing of new and unproven vaccines—on developmentally disabled children in state institutions, and the elderly poor in hospitals and state homes.  

 

Children’s orphanages were frequent test sites for vaccine development, with smallpox , measles, mumps, chickenpox, and tuberculosis vaccines routinely tested in orphanages at the end of the 19th century and beginning of the twentieth centuries.[lxvi] Consent to do such vaccine experimentation was simply dispensed with, even when parents were available, and little vaccine success was achieved. Negative consequences for the children, however, were endemic.

 

In 1895, for example, Drs. Walter Reed and George Sternberg tested smallpox immunity by injecting orphanage children with active smallpox virus, which had the potential to kill or deform the young patients.[lxvii]  Similarly, in 1912, Dr. Carl von Ruck tested his live tuberculosis vaccine on 262 North Carolina orphans, despite evidence suggesting that recipients of his tuberculosis “vaccine” succumbed to tuberculosis more frequently than the unvaccinated.[lxviii] The first two decades of the twentieth century saw a grim expansion of vaccine testing on institutionalized children.

 

Casual, unregulated vaccine testing on the captive and vulnerable continued apace throughout the first half of the twentieth century. Various flu vaccines were given without consent on developmentally disabled by Jonas Salk and U.S. Army during the 1940’s.[lxix]  Likewise, a completely unregulated potential hepatitis vaccine was tested on developmentally disabled children at Willowbrook State Home in the 1950’s.[lxx]  All of these experiments, and many others, were done in the name of “public health.”

 

These actions and attitudes towards individuals who were  sick, aged, intellectually or developmentally disabled, mentally ill, or impoverished reached its zenith in the two decades before World War II. World War II and the effort to defeat Nazism stemmed the overt tide of enthusiasm for eugenical rhetoric, since Nazi policies not only embraced American eugenics but of course implemented it to horrifying levels.[lxxi] Nonetheless, many of the radical, brutal therapies used to treat the disabled elderly, sick, and mentally ill continued indiscriminately throughout the 1940s, including mass sterilization, malarial fever therapy (injecting the patient with malaria to “cure” syphilis), lobotomies, shock treatments to induce painful convulsions, and other types of outrageous human medical experiments.[lxxii]

 

Following World War II, the Anglo-American elite, in medicine, law and public health, moved away from outright endorsement of eugenics, but never internally repudiated it.[lxxiii] The blueprint of eugenics can still be traced in healthcare and public health, as evidence by our reaction to the COVID-19 pandemic. The longstanding emphasis on an individual’s community “value” continues to frame treatment of those with disabilities, the aged, and the incarcerated, particularly in a time of crisis.

 

The standard historical narrative tells us that American eugenic policies ended in the 1960s and 1970’s.[lxxiv] Although some of America’s most obvious eugenics policies—such as highly restrictive immigration laws, state-wide mandatory sterilization statutes, and interracial marriage restrictions—were dismantled or erased,[lxxv] much of its infrastructure remained. Indeed, the “pervasiveness and persistence”[lxxvi] of American eugenic thinking following World War II is startling in its breadth and power.[lxxvii]

 

What has been called the “second wave of eugenics”[lxxviii] still relied heavily on sterilization initiatives following WWII. This sub rosa continuation of eugenic principles and philosophy included policy organizations like Birthright, Inc., the renamed Sterilization League of New Jersey espousing sterilization, racial discrimination, and carefully selected human breeding beginning in 1943.[lxxix] Supported by well-known philanthropists such as Henry Gamble (of Proctor and Gamble), ACLU chair Eduard C. Lindeman, prominent women’s health specialist Dr. Robert L. Dickinson, and NAACP supporter Rev. Guy Emery Shipler, Birthright directly advocated for elimination of “defectives,” contending that “the best in every social class should be encouraged to increase, the worst type in every social class should be helped to die out.”[lxxx]  This eugenic rhetoric was remarkably popular in the decades following World War II, and Birthright’s educational materials were in demand all over the country.[lxxxi]  Although Birthright formally renounced its focus on sterilization in the 1960’s, the precedent created helped the spread and popularization of involuntary sterilization throughout the country, with a focus on Blacks, Puerto Ricans, and Native Americans,[lxxxii] as well as those deemed “low intelligence” or disabled.[lxxxiii] 

 

Over thirty-one states had sterilization programs enduring well into the 1970s, with the most prominent programs in California, Virginia, and North Carolina.[lxxxiv]  The majority of sterilizations were done in the name of public health.[lxxxv] California, for example, viewed sterilization as a helpful procedure that would “simultaneously defend the public health, preserve precious fiscal resources, and mitigate the menace of the “unfit” and “feebleminded.’”[lxxxvi]  Likewise, in North Carolina, the vast bulk of sterilizations were performed on Blacks and poor young girls and women.[lxxxvii]  Eugenics-based sterilization programs clearly targeted minority women during the 1960s and 1970s.[lxxxviii] But other groups’ fitness to survive and reproduce were also targeted, including the poor, those with disabilities, and those criminally convicted.[lxxxix]

 

Moreover, the framework of medical beliefs that led to such eugenic schemes such as the Tuskegee syphilis study did not magically disappear once that particular public health experiment was concluded.  As Paul Lombardo argues, examining the study’s design in the 1930’s “reveals the confluence of medical education, the Public Health Service bureaucracy, and the American eugenics movement.”[xc]  The eugenic belief in racial differences extended to the medical and public health belief that disease would also manifest differently in different races, thus creating the foundations for the latent syphilis study.[xci]  Once again, public health played a major role in instilling eugenic thinking into medical studies.

 

This eugenic understanding of medical therapeutics, as was taught at the University of Virginia medical school until 1950, was a common take on diagnostic expectations.[xcii] The leading textbooks in histology and embryology, for example, were authored by one of the pioneers of eugenics, Dr. Harvey Jordan, texts that continued to be used throughout the 1950’s.[xciii]  There was considerable overlap in the language and ideas of both the eugenics and public health movements in the first half of the 20th century,[xciv] a commonality that is still with us today.  As Lombardo and Dorr rightly point out, the seductiveness of eugenic language and beliefs was hard to eradicate:  “Eugenics provided a vocabulary for casting ancient prejudices in a scientific voice, thereby sanitizing bigotry and bolstering a medical tradition in which the maladies of black patients were linked to racial differences.”[xcv] 

 

It is unsurprising, then, that medical practices based on “scientific” eugenic beliefs have continued well into the 21st century. Repeated sterilizations performed on incarcerated women in the California prison systems, for example, continued until roughly 2010.[xcvi] From 2006-2010, state-funded doctors sterilized approximately 148 women held in California prisons, with evidence of roughly 100 more sterilizations dating back to the late 1990s.[xcvii] The women alleged that prison medical staff coerced them, particularly targeting women who were Black and Latina,[xcviii] along with those deemed likely  to recidivate.[xcix] California’s long history of forced sterilization was implemented through a robust program in selective breeding—designed to prevent “habitual criminals, inmates of insane asylums and sexual deviants”[c] from having children.

Moreover, eugenic practices continue to abound. In 2017, Glenwood Resource Center, an Iowa residential  home for the seriously intellectually disabled, performed unauthorized medical experiments on residents.[ci] Glenwood staff conducted two types of experiments on residents without their consent.[cii] The first experiment involved overhydrating residents, some of whom were on feeding tubes, causing them physical harm to their nervous systems, skin, and cardiovascular systems.[ciii] The second involved psychological research on impulsivity, with plans for a third set of experiments incorporating sexual arousal of residents.[civ] These experiments continued for two years before they were exposed.[cv]

 

Most recently, allegations arose of sterilization of undocumented women held at the Mexican border.[cvi] A facility gynecologist allegedly performed sterilization surgeries and other procedures on detained female immigrants, procedures which the women neither sought nor fully understood.[cvii] The detainees’ lack of consent and understanding obviously raises serious ethical concerns.[cviii]

 

Public health practices have been strongly influenced by eugenic thinking. In this vein, public health scholars have begun to re-examine the role that eugenics has played in shaping modern public health, noting how eugenic thinking became “a norm embedded in public health concepts, structures and interventions.”[cix] The shameful yet persistent legacy of eugenics continues, undergirding much of the treatment of the captive and vulnerable, in times of crisis and in times of peace.  Our current treatment of these populations during the COVID-19 pandemic, as explored in Part II, illustrates this all too well.

Part II

The treatment of the captive and vulnerable in the midst of a long-running pandemic illustrates how an underlying eugenic philosophy still structures modern public health policy. The minimal effort put forth to protect  these community members illustrates our continuing reliance on eugenic pseudoscience to determine who gets priority care. Specifically, U.S. public health policy has continued to prioritize the healthy, free, and able-bodied over the medically fragile, incarcerated, and disabled. With COVID-19 still surging through the United States after a full year of pandemic response, we are neglecting these populations at our own cost and peril.

Nursing Homes

Long-term adult care facilities have been notoriously deadly hubs during the pandemic. Approximately forty percent of all COVID-19 deaths in the United States have been linked to nursing homes.[cx] Up through November 2020, 100,033 residents and staff at long-term care facilities have died from COVID-19.[cxi] In at least 23 states, the majority of COVID-19 deaths have occurred in adult long-term care facilities.[cxii] Ultimately, deaths in nursing homes and long-term care facilities may comprise at least 50% of the total coronavirus deaths nationwide.[cxiii]

 

State and federal response to this high infection and death rate, however, has been minimal. The protection of vulnerable seniors and other at-risk adults from the coronavirus has been grossly inadequate.[cxiv] Even before the coronavirus, American nursing homes were poorly staffed.  Many underreported their nursing and caretaking staffing levels to regulators for years.[cxv] Essential medical tasks, such as repositioning patients to avoid bedsores (which can cause hospitalization), were frequently left undone, leaving significant gaps in care.[cxvi]

 

These preexisting deficiencies created an ideal petri dish for COVID spread. Coupled with existing supply shortages, poor reporting of Covid-19 infections, failure to adequately monitor disease symptoms, and improper compliance with health recommendations like mask wearing, COVID-19 infection exploded in long-term care home facilities.[cxvii] The high rates of infection and deaths within facilities have not abated since the pandemic began.

 

In one Massachusetts veterans care facility, for example, a staffing shortage led the management to combine two locked dementia wards,[cxviii] mixing infected residents with those who tested negative.[cxix] Seventy-six of these residents died.[cxx] Moreover, staff members at this home were specifically directed not to wear masks and gowns while caring for ill patients.[cxxi] On September 25, 2020, two former leaders of the facility were indicted on charges of criminal neglect, connected to these COVID deaths.[cxxii]

 

A cavalcade of missteps has plagued nursing home experiences with management of COVID-19.  Often, nurses were required to bring in their own medical supplies like thermometers and blood pressure cuffs to treat failing residents, [cxxiii]  because so many facilities were under-provisioned and understaffed.[cxxiv] There were major failures to isolate properly potentially-infected residents.[cxxv] Additionally, multiple states failed to provide enough coronavirus tests to use on residents.[cxxvi]

 

Many facilities also downplayed potential infections,[cxxvii] since a publicized COVID outbreak would hurt their image and bottom line. This attitude, combined with a failure to explain what was happening to families, outside agencies, and even first responders, only made things worse.[cxxviii] Several nursing homes have punished whistleblowers and watchdogs, exacerbating the crisis.[cxxix]

 

Compounding the problem, several states allowed hospitals to send COVID-19 patients into nursing homes and long-term care facilities, ultimately increasing infections and deaths.[cxxx] New York, for example, issued a state directive in March 2020,  permitting COVID-19 patients to be placed in nursing homes in order to free up hospital beds.[cxxxi] The order required nursing homes to readmit former residents with COVID-19 who were released from hospitals, as well as accept new “medically stable” residents, whether or not they were infected with COVID-19.[cxxxii] The nursing homes were also explicitly barred from testing new or returning residents for the coronavirus. [cxxxiii]Minnesota also sent recovering COVID patients from the hospital to nursing homes, and then faced a similar explosion of nursing home COVID infections and deaths.[cxxxiv]

 

The nationwide deaths have been so high that Congress has launched a general investigation to scrutinize the practices of long-term care facilities in Florida.[cxxxv] The Congressional investigation alleges a “widespread and persistent” pattern of deficiencies that include “chronic understaffing, low wages, lack of paid sick leave, improper hand hygiene and poor disease prevention practices – all of which have contributed to the crisis.”[cxxxvi] Many of these care homes have demonstrated severe deficiencies in infection control that placed residents’ health and safety  in “immediate jeopardy,” including staff members who routinely failed to wash their hands, wear  masks, or follow isolation protocols.[cxxxvii]

 

In response to these high infection and death rates, local and national public health regulators eventually began to implement regulations to protect older patients residing in congregate settings.[cxxxviii] These new rules included banning visitors and implementing resident and staff screening.[cxxxix] Nonetheless, most skilled nursing and long-term care facilities have reported high infection and death rates, due to a combination of factors: the lack of attention paid to asymptomatic transmission occurring with both residents and staff; the difficulty in social distancing memory-impaired residents; and failing to adhere to other sanitary protocols.[cxl]

 

Even the PPE that has belatedly been shipped to many nursing homes was made of substandard quality. After many promises, FEMA sent boxes of PPE supplies to various Medicaid and Medicare- certified nursing and long-term care homes across the country in May, providing two shipments of a 14-day supply of surgical masks, gowns, gloves, goggles, and other eye protection.[cxli] When the shipments were opened, however, staff discovered that the supplies were useless or low quality such as “[e]xpired surgical masks, [i]solation gowns that resemble oversize trash bags [with no openings for hands], [e]xtra-small gloves that are all but useless for the typical health worker’s hands.”[cxlii]The insufficient FEMA provisioning reflects a federal public health policy that essentially disregarded nursing home residents.[cxliii] 

 

In general, the failure to safeguard elderly and medically fragile individuals can be traced back to the eugenic disregard for those who were considered unfit, sequestered away in asylums and institutions.  The tremendous neglect suffered by nursing home residents during COVID-19 has its direct antecendants in our eugenic approach to the captive and vulnerable.

 

Also disturbing, some of the medical establishment has begun using nursing home and long-term care residents as convenient populations upon which to test experimental coronavirus treatments. For example, various Pennsylvania nursing homes administered hydroxychloroquine to their residents without even bothering to test them for COVID-19.[cxliv] In the Southeastern Veterans Home in PA, approximately thirty residents received the drug, eleven of whom did not test positive for the virus.[cxlv] Hydroxychloroquine was seemingly randomly prescribed, with little proof that the drug would be effective.[cxlvi] As the nursing home’s former medical director commented, “the risks and potential benefits were completely unknown — no real scientific studies were conducted.”[cxlvii]

 

Hydroxychloroquine carries some serious risks and side effects, including vision changes, muscle weakness, and irregular heart rhythms, sometimes leading to death.[cxlviii] Given the age and general health conditions of many residents, the drug was prescribed without any parameters.[cxlix] Despite these serious risks, none of the nursing homes giving the medication to residents received informed consent from either the patients or their families.[cl] Some homes did not even tell families that the drug was being administered at all.[cli] Experimental treatments on patients without consent would violate Pennsylvania state law.[clii]

 

One resident filed a lawsuit alleging that such prescriptions violated “every national and international protocol on the ethical performance of medical experimentation.”[cliii] Plaintiffs alleged that “unsanctioned and unsupervised biomedical research”[cliv] upon captive and vulnerable patients replicated some of “the horrors of Nazi experimentation on human subjects.”[clv]

 

Likewise, a doctor at a nursing home in Texas began prescribing hydroxychloroquine to dozens of the care home’s elderly and disabled patients diagnosed with COVID-19.[clvi] Although the doctor consulted with “most” of the residents before giving them the drug, he did not get permission from all of them.[clvii]  In other words, the experiment was performed without informed consent and without the standard research protocols.[clviii]

 

Other experimental COVID-19 drugs and treatments are being tested in nursing or long- term care homes. Restorbio is running a phase III clinical trial of its experimental drug, RTB101, in a number of Rhode Island nursing homes.[clix] RTB101, or Dactolisib,[clx] is an oral, selective, and potent TORC1 inhibitor, an anti-neoplastic agent which was previously tested as a tool against clinically symptomatic respiratory infections.[clxi] Those Phase III trials were not successful in combating respiratory infections.[clxii] This failure of the drug, however, did not stop Restorbio from engineering another Phase III trial in over-65 nursing home residents.  The purpose of the current clinical trial is to “determine if prophylaxis with RTB101 decreases the severity of laboratory-confirmed COVID-19 among adults equal or greater than 65 years who reside in a nursing homes in which one or more residents or staff have laboratory-confirmed COVID-19.”[clxiii] 

 

Considering that RTB101 failed to improve elderly people’s respiratory disease,[clxiv] the company’s decision to retry it as a coronavirus treatment is questionable. As the American Society Healthcare Pharmacists (ASHP)[clxv] noted, “Given the lack of pharmacokinetic and safety data for the high favipiravir dosages proposed for treatment of COVID-19, the drug should be used with caution at such dosages, since it is associated with QT prolongation (heart issues).”[clxvi] Presumably Restorbio hopes to salvage their investment by repurposing it as a COVID-19 treatment.

 

Similarly, in the frantic rush for a COVID-19 treatment, Eli Lilly was given special permission to test its COVID-19 experimental antibody, banlamnivab, on various nursing home residents.[clxvii] Although usually nursing home residents are not eligible for such human subject experiments, Eli Lilly, working with NIIAD, sent fleets of RVs with researchers and the drugs to treat residents when there was an outbreak.[clxviii]  To make sure they obtained long-term results, the experiment used 6 times the amount normally prescribed for an individual COVID-19 patient.[clxix] The nursing home clinical trial was instituted after a hospital clinical trial failed to show any improvement in hospitalized patients, as well as for potential safety reasons.[clxx]  The safety concerns did not stop Eli Lilly from testing the drug in nursing homes, however.[clxxi] Once again, the greater needs of public health were placed above individual needs of nursing home patients, who were used as testing grounds for an unknown treatment.

 

Although the toll of COVID-19 on  nursing home residents and staff has been deadly, using this population as a convenient, captive group of test subjects, under emergency conditions, borders on the unethical. Obtaining informed  consent from either nursing home patients or their medical proxies for these clinical trials simply  may not suffice in the panic, fear, and desperation of an uncontrolled world-wide pandemic.

 

Finally, when COVID-19 cases threatened to skyrocket in the early weeks of the pandemic, many states implemented ventilator and ICU-bed rationing plans, either prioritizing nondisabled patients or generally excluding a variety of patients with certain disabilities or above a certain age.[clxxii] States  backed off such rationing plans when numbers improved over the summer, but once case counts began rising in the late fall and winter, many began planning rationing protocols once again.[clxxiii]  In Oregon, for example, a hospital denied ventilator use to a disabled woman to treat COVID-19, pushing instead for a waiver to deny her care entirely.[clxxiv] This was only one of numerous instances of Oregon public health policy rationing COVID-19 treatment to people with disabilities.[clxxv]  Such discriminatory practices have happened all over the country, negatively affecting elderly individuals as well.[clxxvi]  The denials of care have been specifically linked to a health-care provider’s determination that the affected individuals have a “low quality of life,” essentially not worth preserving or “wasting” PPE to treat.[clxxvii] 

 

These COVID-19 rationing protocols “inflict discrimination ‘by reason of’ or ‘on the basis of’ disability.”[clxxviii] Various states, in their hospital triage planning documents, have stated that certain disabilities would push an individual further down the list for ventilator use, in certain circumstances disqualifying them completely.   Disqualifying or delaying critical medical care for disabled or elderly individuals on the basis that their lives are not “worthy” of saving or extending[clxxix] is a fairly clear-cut tenet of eugenic philosophy.  

 

In short, eugenic philosophy still undergirds much current state public health policy regarding treatment rationing, medical equipment, and medication.  Our “overt and implicit bias” against the elderly ill continues to shape the way we prioritize people for COVID-19 treatment.[clxxx] This bias proves doubly true for human subject experimentation on the captive and vulnerable in the search for a COVID-19 cure or treatment.[clxxxi]

 

 Our public health policy for nursing homes residents during the pandemic has followed the discriminatory blueprint of eugenic thinking. The disregard and neglect these residents have endured tragically parallels the long-standing eugenic beliefs that those who were aged or unfit should be parceled off to asylums to die. Unregulated or questionable medical experimentation performed on vulnerable residents during the midst of such COVID neglect, without consent, links back to our eugenic past.

Psychiatric Hospitals and Mental Institutions

Despite minimal media coverage and little public response, psychiatric hospitals   and other mental-health institutions have also been hit hard by the spread of COVID-19. Like nursing homes, psychiatric wards have been hotbeds for coronavirus, given most hospitals’ close confines and revolving door of untested patients. Many psychiatric patients cycle through institutions with high COVID-19 rates, such as homeless shelters, emergency rooms, nursing homes, and jails.[clxxxii] In New York alone, over thirty-eight patients in psychiatric hospitals died from COVID-19 in the first few months of the pandemic.[clxxxiii]

 

Controlling COVID-19 spread in psychiatric hospitals is particularly challenging due to the revolving door of patients and lack of patient segregation inside.[clxxxiv] Enforcing social distancing and mask wearing for patients is extremely difficult, given certain psychiatric issues.[clxxxv] Poor personal hygiene is not uncommon, which it hard to follow COVID-19-safe regimes such as washing hands frequently..[clxxxvi] Patient immunity can be seriously compromised due to some of their medications, which can interfere with their immune systems.[clxxxvii] Staff have to worry about ingestion of alcohol-based hand sanitizer.[clxxxviii] Windows are often sealed shut to prevent suicide.[clxxxix] The physical space of the hospitals themselves promote the spread of COVID-19; “air systems are old, hallways are narrow, and shared bedrooms are intentionally spartan,” in order to foster patient interaction.[cxc] Patients cannot be forcibly secluded in their rooms.[cxci] There is little PPE available, despite staff workers’ need to sometimes physically restrain patients.[cxcii] Accordingly, many staff workers and nurses have also contracted the virus.[cxciii]

 

It has been challenging to obtain precise numbers regarding the spread of the coronavirus in psychiatric hospitals. As of April 2020, 63 state institutions had been infected with COVID-19, with approximately 1,450 cases.[cxciv] Other than that, there are very few casualty statistics.[cxcv]

 

Equally troubling, many psychiatric hospitals are turning away patients with serious mental illnesses due to the fear of COVID-19. Sometimes patients must languish in ERs for days, awaiting placement; some patients in danger must be sent home because hospitals have nowhere to send them.[cxcvi] Some patients needing psychiatric beds return to crowded homeless shelters, where the virus is prevalent.[cxcvii]

 

The poor conditions in mental hospitals nationwide have led to at least one federal lawsuit. In Baton Rouge, Louisiana, two current patients seek release from an institution where nine people have died from COVID-19.[cxcviii] The patients allege that the facility failed to maintain hygiene and did not isolate infected patients.[cxcix] Moreover, the patients claim that the institution is so infrequently cleaned that “maggots grow in drains.”[cc] The lawsuit also claims that initial attempts at isolating patients stopped when the institution simply gave up.[cci]

 

In California, one state psychiatric hospital was so hard hit by rapid COVID spread among patients that a federal court had to consider whether to release them from the institution.  In January 2021, Patton State Psychiatric Hospital, in San Bernadino, had 471 out of 1300 patients test positive for the virus, with 11 patients hospitalized and 14 deaths.[ccii]  Most of the patients have been found incompetent to stand trial due to mental illness, and thus would not normally be released.[cciii]  The Covid-19 spread was attributable to extreme overcrowding.[cciv]  The State opposed any release, claiming that vaccination would soon solve the problem, although this contention was challenged by a member of USC’s Vaccine Leadership Group, who noted that the slow pace of vaccination for the hospital would not solve the problem..[ccv]  Ultimately the patients were not release, and a total of 19 patients died while vaccination proceeded.[ccvi]

 

Although the COVID-19 crisis continues to infect psychiatric hospitals, attention has largely moved elsewhere.[ccvii] For example, Florida’s Department of Children and Families simply failed to report COVID-19 infections at the state’s largest mental hospital, until the local newspaper did an investigation.[ccviii] Like the fate of psychiatric patients in general, the issue is too often forgotten. Following the blueprint of eugenic thinking has meant that once psychiatric residents are placed in wards, institutions, or asylums, they tidily disappear from view—in other words, a permanent  isolation for the “socially inadequate.”[ccix]

Group Homes for Intellectual/Developmental Disabilities

Group care homes have been another largely overlooked setting for COVID-19 infection and death, particularly for people with developmental or intellectual disabilities. Both populations have suffered greatly in these types of facilities during the recent pandemic, and yet the public remains largely unaware of these homes’ plight has been negligible.

 

Group homes and care facilities housing intellectually and developmentally disabled (IDD)[ccx] individuals have struggled with protecting residents from COVID-19. Because these homes are rarely in the public eye, little attention has been paid to the plight of those residing and working in congregate living settings. Nationwide, approximately 66,000 people nationwide live in intermediate care facilities, and an even higher number of individuals live in group homes, although the exact number is unclear.[ccxi]

 

The toll of coronavirus on people with IDD has been grave. One advocacy group has estimated that over 18,000 residents and staff members have perished from COVID-19, and another 90,000 have been infected.[ccxii] Recent coronavirus death rates for all individuals with developmental disabilities have been estimated near 15%, compared to 7.9% in New York City,    especially for those living in congregate settings.[ccxiii] The higher death rate from COVID-19 holds not just for adults, but children as well.[ccxiv]

 

The majority of IDD individuals living in group homes and institutions do not have access to personal protective equipment.[ccxv] The staff in such settings often have little access to PPE as well.[ccxvi] In addition, as many facilities have restricted visitors to halt COVID-19 spread, many residents are unable to report abuse and neglect.[ccxvii] Finally, these group homes and institutions are no longer being inspected during the pandemic to control virus spread.[ccxviii] Little oversight exists to ensure that staff implement proper infection control measures, for both themselves and residents.[ccxix]

 

IDD residents in group homes and intermediate care facilities have a higher risk of contracting COVID-19.[ccxx] The reasons for this include living in a congregate setting and the difficulty some of these residents have in practicing social distancing.[ccxxi] Residents also often rely upon closely proximate support staff.[ccxxii] It also can be more difficult to detect early-stage COVID-19 for such residents, since they may have more challenges in communicating their needs and emotions.[ccxxiii] Finally, many individuals with IDD also have pre-existing conditions and special healthcare issues, which intensifies the threat of contracting and becoming seriously ill from COVID-19.[ccxxiv]

 

In Louisiana, for example, individuals with IDD have contracted COVID-19 at a rate four times higher than the rest of Louisiana.[ccxxv] Tragically, this is also true of the death rate.[ccxxvi] In New York, one home for individuals with severe disabilities saw 36 out of 47 residents stricken with coronavirus by April 2020, with two dead and nine still hospitalized.[ccxxvii] Throughout all of New York, 1,100  of the 140,000 people with developmental disabilities had contracted the virus by that same point, with 105 dead – a far higher rate of death than that of nursing homes, although considerably less publicized.[ccxxviii]

 

Similiarly, in Pennsylvania, people with intellectual disabilities and autism contracting COVID-19 died at twice the rate of others who contracted the virus.[ccxxix] In general, the intellectually and developmentally disabled are four times as likely to contract COVID-19 than the general population, and twice as likely to die from the disease once contracted.[ccxxx] Congregate living has turned deadly with the advent of COVID.[ccxxxi]

 

Notwithstanding these risks and difficulties, facilities serving disabled individuals have not   received enough financial assistance to weather COVID. Even though staff are working longer hours to minimize exposure and ensure their clients get proper care during the pandemic, many institutions are unable to get supplemental federal or state funding to help with increased costs.[ccxxxii]

 

People with intellectual and developmental disabilities living in care facilities “are marginalized across the spectrum.”[ccxxxiii] Medicare and Medicaid have required nursing homes to publicly report COVID-19 infection rates, but have not extended such requirements to facilities for the disabled.[ccxxxiv] Nor has Medicaid increased reimbursements to intermediate care facilities and group homes to cover the extra costs of more staff and supplies to prevent COVID-19spread.[ccxxxv] Many facilities have spent a third of their annual revenue on unexpected pandemic costs, leaving them with only enough cash reserves to cover a month or fewer of operations.[ccxxxvi]

 

Although Medicaid disability facilities have called on Congress for emergency relief, it has not been granted.[ccxxxvii] The Department of Health and Human Services granted a $15 billion disbursement, but the financial relief must be split between all Medicaid-eligible facilities as well as Medicaid providers.[ccxxxviii] No specific funding has been earmarked for facilities caring for intellectually and developmentally disabled individuals, even after the passage of the December 2020 COVID relief bill.[ccxxxix]

 

Additionally, despite high-risk status, many states have not prioritized IDD/DD adults for the COVID vaccine. Although the CDC has classified disabled residents of long-term-care facilities and their caregivers as “1a priority,” many people with disabilities who receive long-term care outside of these settings are excluded.[ccxl] In some states, such as Maryland and Alabama, and in the District of Columbia, long-term care residents with disabilities are even further down the priority vaccine list. Many states do not give intellectually disabled adults any prioritization at all.[ccxli] Other than noting that individuals with Down syndrome should be prioritized, the CDC does not mention any other disabilities, nor mention group care homes at all.[ccxlii]

 

The lack of vaccine prioritization is simply another COVID oversight for intellectually disabled and developmentally disabled adults, following the failure to provide disability care workers with protective equipment, failure to make testing sites wheelchair accessible, imposing funding cuts to in-home care programs, and failure to increase funding to community-based disability services.[ccxliii] Indeed, the federal government has not even tracked the number of COVID deaths of disabled adults living in institutions or group facilities, as they have done in nursing homes.[ccxliv]

 

The continuing nationwide failure to protect people with intellectual and developmental disabilities from COVID or prioritize them in vaccine distribution may sadly mirror how society values these populations.[ccxlv] Our neglect of these populations reflects their marginalized status, which often translates to overt discrimination. Such overt discrimination can be directly linked back to eugenic thinking, which sought to control, sequester, and ultimately eradicate the very existence of people with intellectual and developmental disabilities.[ccxlvi] The handling of the coronavirus pandemic is just another way that this discrimination and neglect appears,[ccxlvii] tragically this time with deadly consequences. Ironically, July 26, 2020 marked the 30th anniversary of the Americans with Disabilities Act (ADA),[ccxlviii] the civil rights legislation which provides legal protection from discrimination to individuals with disabilities.[ccxlix] Although individuals with IDD are three times as like to die from COVID, little note of this tragedy has been taken.[ccl] These individuals have once again become forgotten.[ccli]

Part III

Our continued reliance on eugenic thinking in creating public health policy has resulted in the substandard treatment of captive and vulnerable populations during the COVID-19 pandemic. The effects of this treatment will ripple through communities long after the pandemic is over.  Thus while eventually this particular pandemic will recede, the subliminal eugenic blueprint will still remain if we do not take action to counter it.

 

Accordingly, we need to take specific steps to start eradicating the hidden pattern of eugenic thinking, particularly when it comes to our behavior towards captive and vulnerable populations. First, we must provide a much more comprehensive education regarding the origins and current practice of eugenics. This could be achieved by teaching the full history of eugenics in high schools, colleges, schools of public health and medical schools, instead of dismissing it as a relic of the past. It is critical to introduce an “active historical memory of eugenics,” reversing the long-lasting public historical amnesia that still surrounds eugenics in all arenas.[cclii]

 

The acceptance of eugenic beliefs in scientific, medical, and public health discourse is still not well known.  There is a widespread assumption that eugenicists were outside the mainstream scientific, medical, and academic practice of their time, when in fact the opposite is true.[ccliii]   Early 20th century eugenics framed their work as objective science,[ccliv] and many accepted it as such. The extensive public support for eugenic plans and goals during the Progressive Era is something that has been conveniently forgotten over the years,[cclv] hiding the eugenic roots of so much scientific and public health policy.   Our long and complex eugenic history has been “hid[ing] in plain sight”[cclvi] for far too long.

 

The general ignorance about the long history of American eugenics partially explains why the eugenics blueprint is so frequently used. Even among historians, academics, and medical professionals, the reality of our shameful past and present is rarely discussed, let along specifically acknowledged and delineated. Accordingly, one way to spotlight our continued reliance on eugenic philosophy is to prominently teach its history in all levels of schooling.  As historians have noted, “how we address the history of eugenics has the power to create or limit historical memory and active engagement with the past.”[cclvii]

 

It is well past time to teach our eugenic history and eradicate what is left of eugenic thinking in our present. Education and permanent ethical oversight will help make this a possibility.

Teaching the History of Eugenics

Eugenic history would ideally be taught in middle or high school as a basic teaching module, and then become more complex and more detailed in post-secondary education, whether college, professional school, or graduate school.  All levels of American education need to include our history of eugenics.

 

The  standard middle and high school history curriculum largely ignores American eugenics and its influence on public policy. [cclviii] At best it is mentioned incidentally.  For children in secondary education, there are a few programs that can be used in social studies, humanities, or science classes.[cclix] For example, Facing History and Ourselves, which teaches about historical genocide, has a training course for teachers focusing on American  eugenics. [cclx] Based on the text Race and Membership in American History, the course explains how “the eugenics movement represents a moral fault line in our history,” and helps students trace the path.[cclxi] This module underlines that “the eugenics movement was not a footnote in history.”[cclxii]

 

Once at the post-secondary education level, the teaching can become more specialized and complex. The inclusion of eugenics history into college pedagogy is particularly important given that so many institutions of higher learning have been loci of eugenic thinking.[cclxiii] But even at colleges and universities without those specific histories, it is crucial to explore and share our past decisions, in part because it is “a hidden part of American scientific history — people didn’t like to talk about it.”[cclxiv] Too many educational institutions are still reluctant to discuss this painful history and present practices, which makes such teaching all the more important.

 

Critically, American eugenic thinking should be taught not just in History or American Studies classes, but also in science and genetics classes, whether undergraduate or graduate level. The history of American Eugenics is “conspicuously absent” from most modern science and genetics textbooks.[cclxv] In contrast, Harvard now offers a graduate microbiology class entitled “Social Issues in Biology,” which specifically addresses the issues of eugenics, sterilization, reproducibility, and sexism in science.[cclxvi] As the Genetics Society of America has pointed out, teaching eugenics in science classes makes future scientists “less likely to repeat the racist mistakes of our past.”[cclxvii] Likewise, eugenics should be prominently taught in history and American studies classes, helping contextualize why such decisions were and still are being made.

 

Likewise, medical schools and public health schools give little time to eugenic philosophy, despite their reliance on eugenic beliefs in the first few decades of the 20th century. One shining counterexample is Harvard Medical School, which began a Personal Genetics Education Program (with a few other medical schools) to offer genetics education programs nationwide.[cclxviii] The program offers workshops for all disciplines, including biology, social studies, law, government, health, humanities and bioethics.[cclxix] Aside from this program, however, medical and public health education about eugenics is relatively minimal.

 

This was recently exemplified in 2018, when faculty at UC Berkeley’s School of Public Health realized that the university was dispersing monies from the Genealogical Eugenic Institute Fund, which supports research and education in eugenics.[cclxx] The fund offered approximately $70,000 yearly to support research and education on policies, practices and technologies that could “affect the distribution of traits in the human race,” citing a “modern definition of eugenics.”[cclxxi] Although UC Berkeley ultimately froze the fund, it had benefited from it since 1975.[cclxxii] Equally important, the fund’s continuing operation illustrates how “[e]ugenic thinking did not disappear after the horrors of the Holocaust were revealed. . . it remains embedded in medicine and public health today.”[cclxxiii]

 

In general, schools, colleges and universities have only recently realized the major role of eugenics in their past. In October 2020, for example, USC removed the name of former president Rufus von KleinSmid from campus after recognizing its own role in helping California advance in the eugenics movement.[cclxxiv] In the same month, Stanford University resolved to rename all buildings named after David Starr Jordan, a founding president of the university who was a driving force of the eugenics movement.[cclxxv] Commendably, Stanford is not simply renaming buildings, but also attempting to “better explain the full range of Jordan’s legacy and contributions.”[cclxxvi] Given how many academics and scientists were involved in eugenics in the early 20th century, this type of reckoning is extremely important.

 

Similarly, Pomona College and CalTech have also protested honoring Robert Millikan, a major CalTech scientist but also the leader of the Human Betterment Foundation, a group infamous for influencing Nazi eugenic policies.[cclxxvii] Pomona College is renaming its Millikan Laboratories, while CalTech has collected hundreds of signatures to remove Millikan’s name from its buildings.[cclxxviii] The University of Virginia has also taken steps to remove eugenicists’ names from their buildings, changing the name of a medical school wing honoring Paul Barringer, a eugenicist who believed slavery benefited Black people.[cclxxix]

 

Somewhat less well known is the major role eugenicists played in California’s and Southwest public schools, initiating and administering racially biased intelligence tests, which sorted many minority students into vocational tracks.[cclxxx]  There was an explosion of IQ testing in public schools  across California and the Southwest, beginning in the 1920’s, which ended up conveniently sending many Mexican, Japanese, Chinese and Black children into either segregated schools or remedial classes.[cclxxxi]  Mexican children in particular were severely prejudiced by this regime of IQ testing, as the results were used to force the children into vocational training, unskilled labor, and agricultural pursuits.[cclxxxii]  The persistence of this kind of eugenic bias ultimately resulted in California Governor Earl Warren signing a law that dismantled educational segregation in 1947.[cclxxxiii]

 

More broadly, the mark of eugenics is widespread among the U.S. public landscape, although little noted until recently.[cclxxxiv] Beginning in the early 20th century, eugenicists began to plan how to best use and conserve the country’s natural resources, so recently wrested from Native Americans and other indigenous peoples.[cclxxxv]  The same general procedure applied to both nature conservation and eugenics:  “As gardeners and foresters would thin weak genetic strains and nurture the strong, so eugenic campaigners called for planned racial improvement through sterilization of people deemed inferior.”[cclxxxvi]  The ultimate goal of creating a society governed by the superior (white, Anglo-Saxon) race was reflected not only in nature and conservation policy, but also in the American Museum of Natural History, the Smithsonian, and others.[cclxxxvii]  The stain of eugenic belief has left little untouched.

 

It has taken over 100 years for many of our most respected institutions to even realize that some of their founders were eugenicists, as was common in the early parts of the 20th century. It is time that the long history of eugenics was exposed, taught, and discussed in all aspects of higher learning.

Contextualize Scientific and Medical “Discoveries” of Past

Most histories of medical and scientific discoveries are taught with minimal information about those who were human research subjects or unwitting victims of the investigators. In part, this is due to our very recent reckoning with our history of research and experiments on the captive and vulnerable.[cclxxxviii] Because Americans are generally ignorant of the origins of most scientific and medical discoveries, there is little awareness of how the captive and vulnerable have been misused for centuries in the name of science and medicine.

 

One recent example is our rediscovery of the history of Dr. Marion Sims, the celebrated “father” of gynecology. Sims did pioneer many gynecological techniques, including inventing the speculum and creating the current procedure to repair vesicovaginal fistulas.[cclxxxix] These techniques, however, were infamously tested on female slaves without either their consent or any anesthesia, a fact widely known but only recently acknowledged.[ccxc] NYC removed Sims’ Central Park statute   in 2018,[ccxci] and there is a growing movement to rename the Sims speculum the “Lucy” speculum, honoring the slave used most frequently in surgeries.[ccxcii]

 

Sims operated numerous times on female slaves to perfect his gynecological surgical techniques, always without anesthesia, which he justified on the racist, eugenicist basis that Black women did not feel pain.[ccxciii] This type of fallacy has persisted to this day, promoting false beliefs about biological differences between Black and white people which has been reflected in, among other things, differential pain treatment between races—specifically, undertreatment of pain in Black people.[ccxciv] These types of erroneous views have contributed to the continuing subconscious beliefs in eugenic thinking, resulting in untold suffering for many. And yet until very recently, Sims’ beliefs and practices were celebrated, without his shadow story being told.

 

Similarly, in the 1970’s, Dr. Eugene Saenger, a pioneering radiologist, experimented with high-dose total body irradiation (TBI), using approximately ninety cancer patients with localized, radio-resistant cancers, despite knowing that TBI was unlikely to work.[ccxcv] Saenger and his partner specifically chose poor or working-class patients–sixty percent of whom were Black–because “these persons don’t have any money and they’re black and they’re poorly washed.”[ccxcvi] A full quarter of these patients died.[ccxcvii]

 

Despite this, Saenger taught at the University of Cincinnati Medical School until his death, receiving a Gold Medal from the Radiological Society of North America.[ccxcviii] He never suffered any serious repercussions from the experiments.[ccxcix] Although the experiment was mentioned in his obituary, little is taught about it in the history of radiology or medicine.

 

The fields of medicine and public health embraced eugenics during the Progressive era, with numerous prominent doctors explaining how “the problematic reproduction of working classes, immigrants, and people of color were especially responsible for the degeneration of society.” [ccc] Even today, eugenic thinking continues to shape the ways that medicine and public health are practiced.[ccci]  And yet there is so little awareness of how both institutions and individuals promoted and practiced this type of pseudoscience, and the lingering effects of their actions in modern public health and medicine.

Conclusion

The hidden history of eugenics continues to affect the world today.  Our nationwide response to COVID-19 illustrates how public health policies and medical practice are still guided by a belief system disadvantaging the captive and vulnerable.  Premised on a subconscious blueprint of eugenic thinking, our COVID-19 response has highlighted an underclass of the “unfit” and “undervalued,” whose lives are literally treated as less valuable.  Although we stopped formally espousing eugenics after its embrace by Nazi powers, its philosophy continued to thrive post WWII.

 

We have continued to practice the tenets of eugenics in a variety of ways.  Our poor treatment of and continuing incarceration of many physically and intellectually/developmentally disabled individuals, in long-term care homes, mental institutions, and nursing homes, still reflects our instinct to segregate and detain those citizens who are not physically, psychologically, or intellectual “fit.”  Accordingly, it should be no surprise that our response to COVID-19 uses the familiar blueprint of eugenics, with predictable consequences for the captive and vulnerable, who are pushed to the side, ignored, or sacrificed for the “greater good.”

 

It is well past time to rip up the eugenics blueprint, and create a new approach that recognizes inherent humanity in all individuals.  This would include two important initiatives.  First, we must provide a much better education regarding the origins and current practice of eugenics.  This could be achieved by addressing the full history of eugenics in high school, colleges, medical schools and schools of public health, not merely dismissing it as a relic of the past.  Along with this call for education, we must start contextualizing many past medical discoveries, noting specifically the numerous sacrifices of often unwilling patients. 

 

It is not enough to simply point out the mistakes of our past, hoping to avoid them in the future.  Instead, we must educate Americans about our continuing practice of eugenics, and how to identify its hidden influence. Otherwise, we are doomed to repeat, subconsciously or otherwise, the very philosophies that we have rejected.   

 

References

[i] Although eugenics fell out of mass popularity following WWII and the Nazi’s embrace of the practice, the philosophy underlying such beliefs and practices were never truly rejected.  See Laura I Appleman, Deviancy, Dependency, and Disability: The Forgotten History of Eugenics and Mass Incarceration, 68 Duke L. J. 417, 448 (2018).

[ii] Jonathan Simon, The Criminal Is to Go Free: The Legacy of Eugenic Thought in Contemporary Judicial Realism About American Criminal Justice, 100 B.U. L. REV. 787, 787 (2020).

[iii] Jonathan Simon, The Long Tail of Eugenics, JOTWELL (November 5, 2019) (reviewing Laura I Appleman, Deviancy, Dependency, and Disability: The Forgotten History of Eugenics and Mass Incarceration, 68 Duke L. J. 417 (2018)), https://crim.jotwell.com/the-long-tail-of-eugenics/.

[iv] Simon, Criminal Is to Go Free, supra note __, at 788.

[v] See, e.g., Alexandra Stern, Eugenic Nation: Faults and Frontiers of Better Breeding in Modern America 56-60 (2005) (detailing how U.S. public health officials instituted various quarantines & “cleanliness” checks on Mexican citizens seeking to cross border into Texas);  Amy Fairchild, Science at the Borders:  Immigrant Medical Inspection and the Shaping of Modern Industrial Labor Force (2003) (exploring how public health exams on immigrants south of the border had eugenic components);

[vi] Cf. generally Thomas Leonard, Illiberal Reformers: Race, Eugenics, And American Economics In The Progressive Era (2016); Paul A. Lombardo, Three Generations, No Imbeciles: Eugenics, The Supreme Court, And Buck V. Bell (2008) (detailing factual and legal history of Buck V. Bell); David J. Rothman, Conscience And Convenience: The Asylum And Its Alternatives In Progressive America (1980) (discussing influence of eugenics on progressive American law); Mary Crossley, Reproducing Dignity: Race, Disability, and Reproductive Controls, 54 U.C. DAVIS. L. REV. 195, 204-234 (2020); Michael Willrich, The Two Percent Solution: Eugenic Jurisprudence and the Socialization of American Law, 1900-1930, 16 LAW & HIST. REV. 63, 64 (1998) (discussing minimal mention of eugenics in criminal justice history).

[vii] 274 U.S. 200 (1927).

[viii] See Oleson, The New Eugenics, supra note __, at 4.  Although Skinner v. Oklahoma, 316 U.S. 535 (1942), held that compulsory sterilization of habitual criminals was unconstitutional if the sterilization statutes treated similar crimes differently, this did not affect the constitutionality of Buck v. Bell.

[ix]  Vaughn v. Ruoff, 253 F.3d 1124, 1128-30 (8th Cir. 2001)(holding that social service workers involved in forcible sterilization were subject to qualified immunity on due process claims).  See also Denhoed, Forgotten Lessons, supra note __, at id. 

[x] Appleman, Deviancy, supra note __, at 448.

[xi] Laura I Appleman, The Captive Lab Rat:  Human Medical Experimentation in the Carceral Era, 61 B.C. L. Rev. 1,8 (2020).

[xii] See Stern, Eugenic Nation, supra note __, at 60-61.

[xiii] See Simon, Criminal Is to Go Free, id. at 2; Karen Norrgard, Human Testing, The Eugenics Movement, and IRBs, 1 NATURE EDUC. 170 (2008).

[xiv] Simon, Criminal is to Go Free, id. at 790.

[xv] Appleman, Deviancy, at 419.

[xvi] Id.

[xvii] Simon,  Criminal is to Go Free, supra note __, at 790.

[xviii] Appleman, Deviancy, supra note __, at 436.

[xix] See Liat Ben-Moshe, Decarcerating Disability: Deinstitutionalization and Prison Abolition 69-110 (2020); David Mitchell and Sharon Snyder, Cultural Locations Of Disability 101-105 (2006); Paul Lombardo, Three Generations, No Imbeciles 7-19 (2002); John Sutton, The Political Economy of  Madness: The Expansion of the Asylum in Progressive America, 56 AM. SOC. REV. 665, 669 (1991).

[xx] See Mary Nash, Social Eugenics and Nationalist Race Hygiene in Early 20th Century Spain, 15 HIST. EUR. IDEAS 741, 741 (1992).

[xxi] LOMBARDO, supra note __, at 11.

[xxii] Nash, at id.

[xxiii] LEONARD, supra note __, at 112.

[xxiv] Appleman, supra note __, , at 437.

[xxv] Id.

[xxvi] Harry G. Hutchison, Waging War on the “Unfit”? From Plessy v. Ferguson to New Deal Labor Law, 7 STAN. J. C.R. & C.L., 1, 4 (2011).

[xxvii] Appleman, Deviancy, at 436, 444.

[xxviii] Id. at 447.

[xxix] See Paul Lombardo, Eugenics and Public Health: Historical Connections and Ethical Implications, in Oxford Handbook of Public Health Ethics 643 (2019)

[xxx] Appleman, Deviancy, at 433.

[xxxi] See Lombardo, Eugenics and Public Health, supra note __, at 642.

[xxxii] See Lombardo, Eugenics and Public Health, supra note __, at 644

[xxxiii] See Lombardo, Eugenics and Public Health, supra note __, at 644

[xxxiv] See Lombardo, Eugenics and Public Health, supra note __, at 644

[xxxv] Id.

[xxxvi] Id. 

[xxxvii] Id. 

[xxxviii] Id. at 647.

[xxxix] Id. 

[xl] See Fairchild, Science at the Borders, supra note __, at 194.

[xli] See Fairchild, Science at the Borders, supra note __, at 194.

[xlii] See Fairchild, Science at the Borders, supra note __, at 58.

[xliii] See Fairchild, Science at the Borders, supra note __, at 68.

[xliv] Lombardo, id. at 15.

[xlv] A Rising Tide of Feeblemindedness, CHI. TRIB., Feb. 2, 1923, at 8.

[xlvi] Appleman, Deviancy, at 448.

[xlvii] Appleman, Deviancy, at 447.

[xlviii] See, e.g., Walter Fernald, Address, The Burden of Feeble-Mindedness, 611 BOS. MED. & SURGICAL J. 911, 913– 14 (1912) (discussing “widespread prevalence of feeblemindedness” and “large numbers of feebleminded persons” in Massachusetts);  Appleman, Deviancy, at 442, 448.

[xlix] Appleman, Deviancy, at 446.

[l] Id.

[li] CHARLES B. DAVENPORT, EUGENICS: THE SCIENCE OF HUMAN IMPROVEMENT BY BETTER BREEDING 34 (1910).

[lii] Appleman, Deviancy, at 446.

[liii] See Martin Pernick, Eugenics and Public Health in American History, 87 AM. J. PUB. HEALTH 1767, 1768 (1997) (“Public health agencies and eugenics organizations often overlapped in goals and methods, programs, and personnel.”).

[liv] See Public Health in the Progressive Era, OHSU Historical Collections, https://www.ohsu.edu/historical-collections-archives/public-health-progressive-era

[lv] See Paul Lombardo, Eugenics and Public Health:  Historical Connections and Ethical Implications, in Oxford Handbook of Public Health Ethics 642-43 (2019).

[lvi] Id. at 643-44.

[lvii] Id. at 644.

[lviii] Id.  at 646-47.

[lix] Lombardo and Dorr, Tuskegee Syphilis, supra note __, at 296.

[lx] Lombardo and Dorr, Tuskegee Syphilis, supra note __, at 306.

[lxi] See Laura I Appleman, The Captive Lab Rat:  Human Medical Experimentation in the Carceral State, 61 B.C. L. Rev. 1, 3 (2020).

[lxii] See Appleman, Captive Lab Rat, supra note __, at 1-2.

[lxiii] Id. at 4.

[lxiv] Id. at 4. 

[lxv] Id. at 21.

[lxvi] See Susan E. Lederer, Subjected to Science: Human Experimentation in America Before the Second World War 61 (1995);  Susan E. Lederer & Michael A. Grodin, Historical Overview: Pediatric Experimentation, in Children as Research Subjects: Science, Ethics, and Law 8 (Michael A. Grodin & Leonard H. Glantz eds., 1994).

[lxvii] See Appleman,  Captive Lab Rats, supra note __, at 11.

[lxviii] See id. at 12.

[lxix] See id. at 7.

[lxx] See id.

[lxxi] Appleman, Deviancy, at 448.

[lxxii] Id. at 449-50.

[lxxiii] Simon, id. at 791.

[lxxiv] See Alexandra Stern, Eugenic Nation: Faults and Frontiers of Better Breeding in America 183-84 (2005).

[lxxv] Id. at 184.

[lxxvi] See Roberta Bivins, Book Review: Eugenic Nation, 50 Med. Hist. 544, 545 (2006), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1592626/.

[lxxvii] Appleman, Deviancy, at 461.

[lxxviii] See Kevin Begos, The American Eugenics Movement After World War II, Part I, Indyweek (May 18, 2011), https://indyweek.com/news/american-eugenics-movement-world-war-ii-part-1-3/

[lxxix] See https://archives.lib.umn.edu/repositories/11/resources/2395

[lxxx] Begos, American Eugenics, Part I, supra note__, at id. 

[lxxxi] Begos, American Eugenics, Part I, supra note__, at id. 

[lxxxii] See Neo-Eugenics, World War II and After, The History of Eugenics, at:  https://www.historyofeugenics.com/neo-eugenics-post-wwii

[lxxxiii] See Kim Severson, Thousands Sterilized, a State Weighs Restitution, New York Times, December 9, 2011, at: https://www.nytimes.com/2011/12/10/us/redress-weighed-for-forced-sterilizations-in-north-carolina.html.

[lxxxiv] Severson, Thousands Sterilized, supra note __, at id.

[lxxxv] See Alexandra Stern, Sterilized in the Name of Public Health:  Race, Immigration, Health, and Public Control in California, 95 Am. J. Pub. Health 1128, 1129 (2005).

[lxxxvi] Id.  at 1130.

[lxxxvii] See Severson, Thousands Sterilized, supra note __, at id.

[lxxxviii] Begos, at id.

[lxxxix] Id.

[xc] See Paul Lombardo & Gregory Dorr, Eugenics, Medical Education, and the Public Health Service: Another Perspective on the Tuskegee Syphilis Experiment, 80 Bull. Hist. Med. 291, 294 (2006).

[xci] Lombardo & Dorr, Tuskegee Syphilis, supra note __, at 294.

[xcii] Lombardo & Dorr, Tuskegee Syphilis, supra note __, at 294.  As the authors contend, UVA medical school provided “systematic training that encouraged thinking about syphilis, its victims, and its treatment in eugenic terms.”  Id. at 295.

[xciii] Lombardo & Dorr, Tuskegee Syphilis, supra note __, at 302.

[xciv] Lombardo & Dorr, Tuskegee Syphilis, supra note __, at 294.

[xcv] Lombardo & Dorr, Tuskegee Syphilis, supra note __, at 316.

[xcvi] See Corey G. Johnson, Female Inmates Sterilized in California Prisons without Approval, CENT. INVEST. REP. (July 7, 2013), https://www.revealnews.org/article/female-inmates-sterilized-in-california-prisons-without-approval/.

[xcvii] Id.

[xcviii] See Shilpa Jindia, Belly of the Beast: California’s Dark History of Sterilizations, GUARDIAN (June 30, 2020), https://www.theguardian.com/us-news/2020/jun/30/california-prisons-forced-sterilizations-belly-beast.

[xcix] Johnson, at id.

[c] Specifically, “California made it legal for state officials to asexualize those considered feeble-minded, prisoners exhibiting sexual or moral perversions, and anyone with more than three criminal convictions.” This included castrations and ovary removal. See Abate, Shameful Science, at id.

[ci] See Iowa Violated Constitutional Rights of People with Disabilities at Glenwood Resource Center, GAZETTE (Dec. 22, 2020), https://www.thegazette.com/subject/news/government/feds-iowa-violated-constitutional-rights-of- people-with-disabilities-at-glenwood-resource-center-20201222.

[cii] Id.

[ciii] See Rachel Droze, DOJ Report on Glenwood Resource Center Details Human Experiments, Lack of Communication with State, WE ARE IOWA (December 23, 2020), https://www.weareiowa.com/article/news/local/local-politics/glenwood-resource-center-department-of-justice- report-human-experimentation-iowa-department-of-human-services/524-a0a15b9d-482a-4792-b246-11b4b30834a6

[civ] Iowa Violated Rights, at id.

[cv] Id.

[cvi] See Catherine Shochet, In a Horrifying History of Forced Sterilizations, Some Fear the U.S. is Starting a New Chapter, CNN (September 18, 2020), https://www.cnn.com/2020/09/16/us/ice-hysterectomy-forced-sterilization- history/index.html.

[cvii] See Nomaan Merchant, More Migrant Women Say They Didn’t OK Surgery in Detention, AP (September 18, 2020), https://apnews.com/article/georgia-archive-only-on-ap-immigration-f2008d23c5f9087f4214d9722dfb097e.

[cviii] Id.

[cix] Paul Weindlig, Conceptualising Eugenics and Racial Hygiene as Public Health Theory and Practice 4, CONCEPTUALISING PUBLIC HEALTH : HISTORICAL AND CONTEMPORARY STRUGGLES OVER KEY CONCEPTS (2018), https://radar.brookes.ac.uk/radar/file/ce1462f7-119b-4898-a82e-70b20f811649/1/Conceptualising%20eugenics%20and%20racial%20hygiene%20as%20public%20health%20theory

%20and%20practice%20-%202018%20-%20Weindling.pdf

[cx] See Priya Chidambaram, COVID-19 Has Claimed the Lives of 100,000 Long-Term Care Residents and Staff, KFF (Nov. 25, 2020), https://www.kff.org/policy-watch/covid-19-has-claimed-the-lives-of-100000-long-term-care- residents-and-staff/

[cxi] Id.

[cxii] Id.

[cxiii] See Brenda Gazzar, ‘Pandemic within a pandemic:’ What’s fueling LA County’s coronavirus death toll in nursing homes?, LA DAILY NEWS (June 20, 2020), https://www.dailynews.com/2020/06/20/pandemic-within-a- pandemic-whats-fueling-la-countys-coronavirus-death-toll-in-nursing-homes/

[cxiv] See Chidambaram, at id.

[cxv] See Jordan Rau, ‘It’s Almost Like a Ghost Town.’ Most Nursing Homes Overstated Staffing for Years, NY TIMES (July 7, 2018), https://www.nytimes.com/2018/07/07/health/nursing-homes-staffing-medicare.html

[cxvi] Id.

[cxvii] See Nic Querolo, COVID Ravaging Long-Term Care Centers at Fastest Pace Since May, Bloomberg (Nov. 18, 2020), https://www.bloomberg.com/news/articles/2020-11-18/covid-ravaging-long-term-care-centers-at-fastest- pace-since-may

[cxviii] See MARK PEARLSTEIN, THE COVID-19 OUTBREAK AT THE SOLDIER’S HOME IN MT. HOLYOKE 114 – 116 (June 23, 2020), https://www.mass.gov/doc/report-to-governor-baker-re-holyoke-soldiers-home/download

[cxix] See Ellen Barry, ‘Total Pandemonium’: What Went Wrong at a Veterans’ Home Where 76 Died, NY TIMES (June 24, 2020), https://www.nytimes.com/2020/06/24/us/holyoke-soldiers-home.html?searchResultPosition=5

[cxx] Id.

[cxxi] See Pearlstein, at 84-87.

[cxxii] See Criminal Charges Are Filed After 76 Deaths at Massachusetts Veterans’ Home, NY TIMES (September 25, 2020), https://www.nytimes.com/2020/09/25/world/covid-19- coronavirus.html?action=click&module=Top%20Stories&pgtype=Homepage#link-2bb4231b

[cxxiii] Id.

[cxxiv] See E. Tammy Kim, This Is Why Nursing Homes Failed So Badly, NY Times (Dec. 31, 2020), https://www.nytimes.com/2020/12/31/opinion/sunday/covid-nursing-homes.html

[cxxv] Criminal Charges Filed, supra note__, at id. 

[cxxvi] See Gazzar, at id.

[cxxvii] See Chris Kirkland, Pandemic Exposes Systemic Staffing Problems at U.S. Nursing Homes, Reuters (June 10, 2020), https://www.reuters.com/article/us-health-coronavirus-nursinghomes-speci/special-report-pandemic-exposes- systemic-staffing-problems-at-u-s-nursing-homes-idUSKBN23H1L9

[cxxviii] See Ellis & Hicken, COVID-19 Is Ravaging Nursing Homes. Government Records Show Why, CNN (April 24, 2020), https://www.cnn.com/2020/04/24/us/nursing-homes-coronavirus-invs/index.html

[cxxix] Id.

[cxxx] See Luis Ferré-Sadurní and Amy Julia Harris, Does Cuomo Share Blame for 6,200 Virus Deaths in N.Y. Nursing Homes?, NY TIMES (July 14, 2020) https://www.nytimes.com/2020/07/08/nyregion/nursing-homes-deaths- coronavirus.html?searchResultPosition=1

[cxxxi] Id.

[cxxxii] See Hospital Discharges and Admissions to Nursing Homes, NY STATE DEP’T OF HEALTH (March 25, 2020) https://coronavirus.health.ny.gov/system/files/documents/2020/03/doh_covid19-_nhadmissionsreadmissions_- 032520.pdf

[cxxxiii] Id at 1 (“Nursing Homes are prohibited from requiring a hospitalized resident who is determined medically stable to be tested for COVID-19 prior to admission or readmission.”)

[cxxxiv] See Kazan, Repeating Its Deadliest Pandemic Mistake, at id.

[cxxxv] See Julie Ochoa & Daylina Miller, Congress Investigates Owner of 69 Long-Term Care Facilities in Florida After Coronavirus Deaths, WUSF NEWS (June 22, 2020), https://wusfnews.wusf.usf.edu/post/congress-investigates- owner-69-long-term-care-facilities-florida-after-coronavirus-deaths

[cxxxvi] Id.

[cxxxvii] Id.

[cxxxviii] See Scott Goldberg, et. al.,Presymptomatic Transmission of SARS-CoV-2 Amongst Residents and Staff at a Skilled Nursing Facility: Results of Real-Time PCR and Serologic Testing 4, CLINICAL INFECTIOUS DISEASES (July 15, 2020) https://academic.oup.com/cid/article/doi/10.1093/cid/ciaa991/5871989#.XxWe71_6CdI.twitter

[cxxxix] Id. at 4.

[cxl] Id. at 8-9.

[cxli] See Coronavirus Pandemic Response: PPE Packages for Nursing Homes, FEMA (May 2, 2020), https://www.fema.gov/news-release/2020/05/02/coronavirus-pandemic-response-ppe-packages-nursing-homes

[cxlii] See Andrew Jacobs, FEMA Sends Faulty Protective Gear to Nursing Homes Battling Virus, NY TIMES (July 24, 2020) https://www.nytimes.com/2020/07/24/health/coronavirus-nursing-homes- PPE.html?action=click&module=Top%20Stories&pgtype=Homepage

[cxliii] See Brian New, Nursing Homes Receive ‘Unusable’ Gowns, Gloves and Masks From FEMA, CBS DFW (June 22, 2020), https://dfw.cbslocal.com/2020/06/22/texas-nursing-homes-unusable-gowns-gloves-masks-fema/

[cxliv] See Vinny Vella, Nursing Homes Treating Coronavirus Patients with Malaria Drug, GOV. TECH. (May 11, 2020), https://www.govtech.com/em/safety/Nursing-Homes-Treating-Coronavirus-Patients-with-Malaria-Drug.html

[cxlv] See Shawn Mulcahy, Southeastern Veterans’ Center, Pa. Facility That Gave Residents Hydroxychloroquine, Cited for Infection-Control Failures, TODAY HEADLINE (July 21, 2020), https://todayheadline.co/southeastern- veterans-center-pa-facility-that-gave-residents-hydroxychloroquine-cited-for-infection-control-failures/

[cxlvi] See Debby Cenziper and Shawn Mulcahy, The ‘Covid Cocktail’: Inside A Pa. Nursing Home That Gave Some Veterans Hydroxychloroquine Even Without Covid-19 Testing, WASH. POST (July 7, 2020).

[cxlvii] Id.

[cxlviii] See Vella, at id.

[cxlix] See Cenziper & Mulcahy, at id.

[cl] See Vella, at id.

[cli] Id.

[clii] Id.

[cliii] See Hannah Albarazi, Pa. Faces Suit Over Nursing Home’s COVID-19 Drug Studies, LAW360 (April 28, 2020), https://www.law360.com/articles/1268158/pa-faces-suit-over-nursing-home-s-covid-19-drug-studies

[cliv] See Vella, at id.

[clv] Id.

[clvi] See Vanessa Romo, COVID-19 Patients Given Unproven Drug in Texas Nursing Home in ‘Disconcerting’ Move, NPR, April 10, 2020, located at:  https://www.npr.org/2020/04/10/830348837/covid-19-patients-given-unproven-drug-in-texas-nursing-home-garnering-criticism

[clvii] Romo, COVID-19 Patients Given Unproven Drug, supra note __, at id.

[clviii] Harris, Frailty of Disability Rights, supra note __, at 7.

[clix] See Phase 3 Study to Determine if RTB101 Reduces the Severity of COVID-19 in Older Adults Residing in Nursing Homes, CLINICAL TRIALS (June 1, 2020), https://clinicaltrials.gov/ct2/show/NCT04409327

[clx] Id.

[clxi] See Steve Hill, Disappointing Results for ResTORbio Human Trial, LIFESPAN (November 18, 2019), https://www.lifespan.io/news/disappointing-results-for-restorbio-human-trial/

[clxii] Id.

[clxiii] See Phase 3 Study RTB101, supra note __, at id.

[clxiv] See Joanne Fogg and Jason Plieth, Puretech’s Cautionary Tale About Pivotal Study Read-Across, EVALUATE, (November 18, 2019), https://www.evaluate.com/vantage/articles/news/trial-results/puretechs-cautionary-tale-about- pivotal-study-read-across

[clxv] The ASHP represents over 55,000 pharmacists who serve as patient care providers in acute and ambulatory settings. https://www.ashp.org/About-ASHP

[clxvi] See Assessment of Evidence for COVID-19 Related Treatments, Favipiravir 5, ASHP COVID CENTER (July 23, 2020), https://www.ashp.org/-/media/assets/pharmacy-practice/resource-centers/Coronavirus/docs/ASHP-COVID- 19-Evidence-Table.ashx

[clxvii] See Matthew Herper, Eli Lilly says its monoclonal antibody prevented Covid-19 infections in clinical trial, Stat News (Jan. 21, 2021), https://www.statnews.com/2021/01/21/eli-lilly-says-its-monoclonal-antibody-prevented-covid-19-in-clinical-trial/

[clxviii] Id.

[clxix] Id.

[clxx] See Vanessa Romo, Eli Lilly Ends Antibody Trial In Hospitalized COVID-19 Patients, Other Trials Go On, NPR (October 20, 2020), https://www.npr.org/sections/coronavirus-live-updates/2020/10/26/928072014/eli-lilly-ends-coronavirus-antibody-treatment-trial-other-studies-go-on

[clxxi] See Romo, supra note __, at id.

[clxxii] Harris, Disability Rights, at 4.

[clxxiii] See R. Lin, L.A. County Outlines Wrenching Moves to Ration Healthcare if COVID-19 Hospital Crisis Worsens, L.A. TIMES (December 19, 2020), https://www.latimes.com/california/story/2020-12-19/los-angeles-county- coronavirus-hospitalization-surge-rationing

[clxxiv] See Joseph Shapiro, Oregon Hospitals Didn’t Have Shortages.  So Why Were Disabled People Denied Care, NPR (December 21, 2020), https://www.npr.org/2020/12/21/946292119/oregon-hospitals-didnt-have-shortages-so-why-were-disabled-people-denied-care

[clxxv] Shapiro, at id.

[clxxvi] Shapiro, at id.

[clxxvii] Shapiro, at id.

[clxxviii] Bagenstos, id. at 5.

[clxxix] Shapiro, at id.

[clxxx] See Samuel Bagenstos, Who Gets the Ventilator? Disability Discrimination in COVID-19 Medical-Rationing Protocols, 130 YALE L.J. F. 1, 8-11 (2020).

[clxxxi] Id.

[clxxxii] See Brian Barnett and Jack Turbin, COVID-19 Is Ravaging America’s Psychiatric Facilities, THE HILL (April 27, 2020), https://thehill.com/opinion/healthcare/494801-covid-19-is-ravaging-americas-psychiatric-facilities

[clxxxiii] See Tom Schuba, State-Run Mental Hospitals See Smaller Toll From COVID-19, But ‘The Threat Has Not Dissipated,’ CHICAGO SUN TIMES (May 19, 2020), https://chicago.suntimes.com/coronavirus/2020/5/19/21264332/illinois-mental-health-hospitals-covid-19

[clxxxiv] See Danny Hakim, “They Want to Forget Us”: Psychiatric Hospital Workers Feel Exposed, N.Y. TIMES (April 24, 2020) https://www.nytimes.com/2020/04/24/nyregion/coronavirus-new-york-psychiatric-hospitals.html

[clxxxv] See Kit Ramgopal, Coronavirus in a Psychiatric Hospital: “It’s the Worst of All Worlds,” CBS NEWS (April 17, 2020), https://www.nbcnews.com/health/mental-health/coronavirus-psychiatric-hospital-it-s-worst-all-worlds- n1184266

[clxxxvi] Barnett and Turbin, at id.

[clxxxvii] Hakim, at id..

[clxxxviii] Ramgopal, at id.

[clxxxix] Barnett and Turbin, at id.

[cxc] Ramgopal, at id.

[cxci] See Masha Gessen, Why Psychiatric Wards Are Uniquely Susceptible to the Coronavirus, NEW YORKER (April 21, 2020), https://www.newyorker.com/news/news-desk/why-psychiatric-wards-are-uniquely-vulnerable-to-the- coronavirus

[cxcii] See Barnett and Turbin, at id.

[cxciii] Hakim, at id.

[cxciv] Ramgopal, at id.

[cxcv] Gessen, at id.

[cxcvi] Id.

[cxcvii] Id.

[cxcviii] See Mental Hospital’s Poor Hygiene Led to Covid-19 Outbreak, WBRZ 2 (May 15, 2020), https://www.wbrz.com/news/lawsuit-mental-hospital-s-poor-hygiene-led-to-covid-19-outbreak/

[cxcix] See Matt Sledge, Louisiana Mental Hospital Patients Claim Isolation, Hygiene Lacking Amid Coronavirus Outbreak, TIMES-PICAYUNE (May 13, 2020), https://www.nola.com/news/coronavirus/article_f17e145a-956d-11ea- b348-434f49c401e9.html

[cc] Id.

[cci] Id.

[ccii] See Richard Winton, As COVID-19 cases rise at a state psychiatric hospital, a federal judge mulls releasing patients, L.A. Times (Jan. 13, 2021), https://www.latimes.com/california/story/2021-01-13/as-covid-19-cases-rise-federal-judge-considers-releasing-patients-from-psychiatric-hospital

[cciii] See Winton, id.

[cciv] Id.

[ccv] Id. 

[ccvi] See Joe Nelson, Patton State Hospital patient vaccinations helping, but advocates call for more measures to curb COVID-19, The Sun (February 26, 2021), https://www.sbsun.com/2021/02/26/patton-state-hospital-patient-vaccinations-helping-but-advocates-call-for-more-measures-to-curb-covid-19/

 

[ccvii] See Michael Gormley, Psychiatric Hospital Patients Vulnerable Amid Pandemic, NEWSDAY (April 27, 2020), https://www.newsday.com/news/health/coronavirus/covid-19-psychiatric-hospital-new-york-1.44082128

[ccviii] Nada Hassanein, ‘I don’t want to die’: Almost three dozen coronavirus cases now at Florida State Hospital, TALLAHASSEE DEMOCRAT (July 22, 2020), https://www.tallahassee.com/story/news/2020/07/22/almost-three-dozen- coronavirus-cases-now-florida-state-hospital/5485504002/

[ccix] Appleman, Deviancy, at 446.

[ccx] In the US, “IDD typically includes more common disabilities such as intellectual disability, cerebral palsy, and Down syndrome, in addition to rare developmental disabilities, such as fragile X and Prader-Willi syndromes.” See Scott Landes & Margaret Turk, COVID-19 Outcomes Among People with Intellectual and Developmental Disability Living in Residential Group Homes in New York State, at 1 DISABILITY & HEALTH J.      (2020), https://www.sciencedirect.com/science/article/pii/S193665742030100X

[ccxi] See Thousands Sick from COVID-19 in Homes for the Disabled, VOICE OF AMERICA NEWS (June 11, 2020), https://www.voanews.com/covid-19-pandemic/thousands-sick-covid-19-homes-disabled

[ccxii] See Michelle Diamant, COVID-19 Cases at Group Homes, Institutions Going Untracked, DISABILITY SCOOP, (May 11, 2020), https://www.disabilityscoop.com/2020/05/11/covid-19-cases-at-group-homes-institutions-going-

untracked/28313/ 2020

[ccxiii] Landes & Turk, id. at 2.

[ccxiv] See Katie Camero, Covid-19 Kills Children with Intellectual Disabilities at Higher Rates. Here’s Why, MIAMI HERALD (July 19, 2020), https://www.miamiherald.com/news/coronavirus/article243470691.html?fbclid=IwAR0Fy4j46MB5nqblnSxT435l9l JyfmOCe_zkfjJxjccapGiU7j2IHaS0Ju8

[ccxv] See Covid-19 Tracker, AUTISTIC SELF-ADVOCACY NETWORK (May 8, 2020),

[ccxvi] Id.

[ccxvii] Id.

[ccxviii] See FAQ FOR STATE SURVEY AGENCY AND ACCREDITING ORGANIZATION CORONAVIRUS DISEASE 2019 SURVEY SUSPENSION, CENTERS FOR MEDICAID AND MEDICARE SERV (March 13, 2020), https://www.cms.gov/files/document/covid19survey-activity-suspension-faqs.pdf

[ccxix] Covid-19 Tracker, at id.

[ccxx] See Disability Rights Louisiana Collects Data on COVID-19 Cases in Group Homes, DISABILITY RTS LOUISIANA (May 6, 2020), https://disabilityrightsla.org/disability-rights-louisiana-collects-data-on-covid-19-cases-in-group- homes/

[ccxxi] Id.

[ccxxii] See Caitlin Gibson, A Time of Unprecedented Fear for Parents of Adults with Intellectual and Developmental Disabilities, WASH. POST (April 4, 2020), https://www.washingtonpost.com/lifestyle/on-parenting/a-time-of- unprecedented-fear-for-parents-of-adults-with-intellectual-and-developmental-disabilities/2020/04/02/

[ccxxiii] Disability Rights Louisiana, at id.

[ccxxiv] See generally Scott Landes et al, Cause of Death in Adults with Intellectual Disability in the United States, J. INTELLECTUAL DISABILITY RESEARCH (2020) (higher rates of heart disease, cancer, choking, and diabetes).

[ccxxv] Disability Rights Louisiana, at id.

[ccxxvi] Id.

[ccxxvii] See Danny Hakim, ‘It’s Hit Our Front Door’: Homes for the Disabled See a Surge of Covid-19, NY TIMES (April 17, 2020), https://www.nytimes.com/2020/04/08/nyregion/coronavirus-disabilities-group-homes.html

[ccxxviii] Id.

[ccxxix] See Joseph Shapiro, COVID-19 Infections and Deaths are Higher Among Those with Intellectual Disabilities, NPR (June 9, 2020), https://www.npr.org/2020/06/09/872401607/covid-19-infections-and-deaths-are-higher-among- those-with-intellectual-disabili

[ccxxx] Hakim, Front Door, at id.

[ccxxxi] See Scott Landes, et al, People with Disabilities in COVID-19: Fixing Our Priorities, 7 AM. J. BIOETHICS 187, 188 (2000).

[ccxxxii] See Sarah Mudd, Center for Developmentally Disabled Responds to COVID-19, HEALTH FORWARD (July 9, 2020), https://healthforward.org/your-story-center-for-developmentally-disabled-responds-to-covid-19/

[ccxxxiii] Hakim, Front Door, at id.

[ccxxxiv] Id.

[ccxxxv] See Shapiro, at id.

[ccxxxvi] See Congressional Leaders Author Bipartisan Letter Calling on Trump Administration to Commit Emergency Funding, INSURANCE NEWS NET (June 4, 2020), https://insurancenewsnet.com/oarticle/american-network-of- community-options-and-resources-congressional-leaders-author-bipartisan-letter-calling-on-trump-administration- to-commit-emergency-funding#

[ccxxxvii] Id.

[ccxxxviii] See Maggie Flynn, HHS to Release $15B in COVID-19 Relief Funds to Medicaid Providers, Skilled Nursing News (June 9, 2020) https://skillednursingnews.com/2020/06/hhs-to-release-15b-in-covid-19-relief-funds-to- medicaid-providers-nursing-home-impact-unclear/

[ccxxxix] See Pam Katz, Shut Out Again: Covid-19 Relief Package Again Excludes Needs of People With Disabilities, Families, Service Providers, The Arc (December 22, 2020), https://thearc.org/shut-out-again-covid-19-relief- package-again-excludes-needs-of-people-with-disabilities-families-service-providers/

[ccxl] See Jessica Contrera, People with Disabilities Desperately Need the Vaccine. But States Disagree on When They’ll Get It, WASH. POST (Jan. 13, 2021), https://www.washingtonpost.com/dc-md-va/2021/01/13/disabled- coronavirus-vaccine-states/

[ccxli] Id.

[ccxlii] Id.

[ccxliii] Id.

[ccxliv] Id.

[ccxlv] See Scott Landes et. al., Less Worthy Lives? We Must Prioritize People with Intellectual and Developmental Disabilities in COVID-19 Vaccine Allocation, LERNER CTR PUB. HEALTH PROMOTION (December 10, 2020), https://lernercenter.syr.edu/2020/12/10/ib-42/

[ccxlvi] Appleman, Deviancy, at 446-47.

[ccxlvii] Emily DeCiccio, Forgotten Population of COVID-19: Developmentally Disabled and Group Home Workers, FOX NEWS (April 22, 2020), https://www.foxnews.com/media/forgotten-population-of-covid-19-developmentally- disabled-and-group-home-workers

[ccxlviii] See Doron Dorfman, Thirty Years Later, Still Fighting Over the ADA, REG. R. (Dec. 7, 2020), https://www.theregreview.org/2020/12/07/dorfman-burke-thirty-years-fighting-over-ada/

[ccxlix] An Overview of the Americans with Disabilities Act, ADA NAT’L NETWORK, https://adata.org/factsheet/ADA- overview

[ccl] See Roni Rabin, Developmental Disabilities Heighten Risk of COVID Death, NY Times (November 10, 2020), https://www.nytimes.com/2020/11/10/health/covid-developmental-disabilities.html

[ccli] DeCiccio, at id.

[cclii]  Chloe Burke and Christopher Castaneda, The Public and Private History of Eugenics: An Introduction, 29 Public Historian 5, 6 (2007).

[ccliii] Burke and Castaneda, Public and Private History, supra note __, at 8.

[ccliv] Burke and Castaneda, Public and Private History, supra note __, at 11.

[cclv] Burke and Castaneda, Public and Private History, supra note __, at 9.

[cclvi] Paul Lombardo, Eugenics: Lessons from a History Hidden in Plain View, California Legislature, Senate Select Committee on Genetics, Genetic Technologies, and Public Policy (March 11, 2003).

[cclvii] Burke and Castaneda, Public and Private History, supra note __, at 16.

[cclviii] See Thomas Cargill, Eugenics in High School History 6, INDEPENDENT REV. (Summer 2020), https://www.independent.org/publications/tir/article.asp?id=1489

[cclix] See Christopher Rearden, American Gothic, TOLERANCE MAGAZINE (2003), https://www.tolerance.org/magazine/spring-2003/american-gothic

[cclx] Id.

[cclxi] See https://www.facinghistory.org/resource-library?search=eugenics

[cclxii] See Rearden, at id.

[cclxiii] See Jonathan Chernoguz, Why We Should Teach the History of Eugenics, BIOPOLITICAL TIMES (October 28, 2014), https://www.geneticsandsociety.org/biopolitical-times/why-we-should-teach-history-eugenics?id=8164

[cclxiv] Id.

[cclxv] See Michelle Markstein et al, Want to Teach Eugenics History in Your Genetics Class? Advice and Resources to Take the Leap!, GENETICS SOC. AM. (June 29, 2020), http://genestogenomes.org/resources-and-tips-for-including- eugenics-history-in-your-genetics-class/

[cclxvi] See M.R.F. Buckley, When Science Can Harm, HARV. MED. SCH. (March 2, 2020) https://hms.harvard.edu/news/when-science-can-harm

[cclxvii] Id.

[cclxviii] See Amy Marcus, Scientists Confront the Ghosts of Eugenics, WALL ST. J. (Aug. 17, 2018), https://www.wsj.com/articles/scientists-confront-the-ghost-of-eugenics-1534523929

[cclxix] See Personal Genetics Education Project, https://pged.org/teacher-development/

[cclxx] See Teresa Watanabe, UC Berkeley Is Disavowing Its Eugenic Research Fund After Bioethicist and Other Faculty Call It Out, L.A. TIMES (October 26, 2020), https://www.latimes.com/california/story/2020-10-26/uc- berkeley-disavows-eugenics-research-fund

[cclxxi] Id.

[cclxxii] Id.

[cclxxiii] Id.

[cclxxiv] Theresa Watanabe, USC Removes Name of Rufus von KleinSmid, A Eugenics Leader, From Prominent Building,

L.A. TIMES (June 11, 2020), https://www.latimes.com/california/story/2020-06-11/usc-removes-name-of-former- president-rufus-von-kleinsmid-a-supporter-of-eugenics-from-prominent-building

[cclxxv] See Chris Peacock, Stanford Will Rename Campus Spaces Named for David Starr Jordan and Relocate Statue Depicting Louis Agassiz, STANFORD NEWS (October 11, 2020), https://news.stanford.edu/2020/10/07/jordan-agassiz/

[cclxxvi] Id.

[cclxxvii] Michael Hiltsik, CalTech Faces Reckoning Over Its Links to Eugenics and Sterilization Movement, L.A. TIMES, (July 7, 2020) https://www.latimes.com/business/story/2020-07-07/caltech-robert-millikan-eugenics-sterilization

[cclxxviii] Watanabe, UC Berkeley, supra note __, at id.

[cclxxix] See Ruth Smith, Another UVA Building Named After a Eugenicist Could Be Renamed, ROANOKE TIMES (Aug. 1, 2019), https://roanoke.com/news/education/another-uva-building-named-after-a-eugenicist-could-be- renamed/article_aee096af-aef6-5968-b60e-015932e99285.html

[cclxxx] Burke and Castaneda, Public and Private History, supra note __, at 13.

[cclxxxi] See Alexandra Stern, Eugenic Nation, supra note __, at 96.

[cclxxxii] See Alexandra Stern, Eugenic Nation, supra note __, at 98.

[cclxxxiii] See Alexandra Stern, Eugenic Nation, supra note __, at 99. 

[cclxxxiv] Burke and Castaneda, Public and Private History, supra note __, at 13.

[cclxxxv] See Charles Wohlforth, Conservation and Eugenics, Orion Magazine, https://orionmagazine.org/article/conservation-and-eugenics/

[cclxxxvi] Wohlforth, Conservation, supra note __, at id.  As the author notes regarding the widespread internalization of eugenic norms, “the U.S. Department of Agriculture encouraged the formation of an American Breeding Association that included research on humans, with funding and support from the Carnegie Institution, the Harriman railroad fortune, and the founders of the Kellogg cereal company, among others.”

[cclxxxvii] Id.

[cclxxxviii] See Esther Choo, The James Marion Sims Problem: How Doctors Can Avoid Whitewashing Medicine’s Racist History, NBC NEWS (June 7, 2018), https://www.nbcnews.com/think/opinion/ james-marion-sims-problem-how- doctors-can-avoid-whitewashing-medicine-ncna880816

[cclxxxix] See Maura Hohman, How This Black Doctor is Exposing the Racist History of Gynecology, USA TODAY (June 29, 2020), https://www.today.com/health/racism-gynecology-dr-james-marion-sims-t185269

[ccxc] Id.

[ccxci] See Choo, at id.

[ccxcii] See Hohman, at id.

[ccxciii] Id.

[ccxciv] See generally Kelly Hoffman et. al., Racial Bias in Pain Recommendation and Treatment Recommendations, and False Beliefs About Biological Differences Between Blacks and Whites, 113 PROC. NAT’L ACAD. SCI. USA 4296 (2016), at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4843483/

[ccxcv] William Dicke, Eugene Saenger, Controversial Doctor, Dies at 90, N.Y. TIMES (Oct. 11, 2007), https://www.nytimes.com/2007/10/11/us/11saenger.html

[ccxcvi] Appleman, Human Medical Experimentation, at 15.

[ccxcvii] Id.

[ccxcviii] Id.

[ccxcix] Id.

[ccc] See Lauren Thompson, “The Presence of a Monstrosity”: Eugenics, Female Disability, and Obstetrical-Gynecologic Medicine in Late 19th-Century New York, 15 Miranda 1, 7 (2017), https://journals.openedition.org/miranda/10536

[ccci] See Manke, Berkeley Public Health, supra note __, at id.

About the Author

Laura I. Appleman​

Laura I. Appleman​ is Van Winkle Melton Professor of Law and University Research Integrity Officer, Willamette University.  She earned her undergraduate and master’s degrees from University of Pennsylvania, and graduated from Yale University Law School.