4.1 Introduction

During the past eighteen months, as medical systems have navigated the COVID-19 pandemic, we have seen the conflict between Public health and individual medical care arise time and again. For sound Public health reasons, hospital visitations were severely curtailed, even forbidden in some settings. Hospital systems that utilized these restrictions saw the transmission of COVID-19 drop significantly between patients and personnel. For equally compelling ethical reasons, providers in these settings who had to enforce these measures experienced substantial moral injury (Anderson-Shaw and Zar 2020). This moral distress arose, one may submit, because of the profound conflict of interests experienced by the practitioner who was devoted to the care of the individual patient while simultaneously enforcing a Public health measure.

We can make a good case that the four basic principles of biomedical ethics often cited in Western settings, namely autonomy, beneficence, non-maleficence, and justice, can also be considered along similar lines (Beauchamp and Childress 2019). The first three principles lean heavily in the direction of individual provider-patient encounters, while justice is a principle which is inherently communitarian in outlook and context.

The response to a crisis, such as COVID-19, may reveal the underlying (mal)functioning of a medical care system and disclose many aspects we often prefer to ignore or deny: structural racism, classism, genderism, and a host of other elements embedded in the social structures in which a medical care system exists. It is often difficult to understand a historical moment as one lives through it. It may be helpful, therefore, to consider other examples of the conflict between larger social considerations and individual practice and examine their impact upon individual providers in their care of individual patients. The Eugenics movement of the late nineteenth and early twentieth century and the Population health movement of the late twentieth and early twenty first centuries serve as two such examples.

I should state from the outset that I am not equating Eugenics with Population health . There are significant and fundamental differences between these movements. There are, however, equally significant and fundamental similarities, and this chapter suggests that by examining these we may gain insight into how larger societal concerns can both illuminate and disrupt the individual patient encounter. Furthermore, we will examine these two movements through a consideration of two phenomena common to them both: their appeal to science over sentiment in the individual encounter, and their alteration of the concept of Informed Consent.

4.2 The Rise of the Eugenics Movement

It would be useful to begin with some definitions. Eugenics was a movement that arose in the Anglo-American context, and by the late nineteenth and early twentieth centuries became a very American medical movement. It had, at its core, the assertion that human genetics was central to human disease, and that by controlling human mating one could eliminate much human disease and human misery. On the face of it, this appeared to be a wise and noble scheme. Early English eugenicists emphasized “positive eugenics”—the encouragement of people with desirable characteristics to marry one another and produce children that were healthier, hardier, and showed even more desirable characteristics (Roberts 1964). Its enthusiasts viewed humans in much the same way gardeners viewed plants, developing cultivars that were more productive, more beautiful, more disease-resistant.

What we might consider “negative” Eugenics was far more rooted in the American experience. This movement sought to remove undesirable traits from the population by either forbidding the marriage and thus potential for procreation from segments of the population deemed to have undesirable traits, or in even more stringent settings, by involuntarily sterilizing those with medical conditions felt to be hereditary. Persons with epilepsy, for example, were refused marriage licenses in many states (Lindsay 1998). “Feeble-mindedness,” an elastic term favored by the American Eugenics movement to represent people with a variety of characteristics and traits deemed undesirable by “proper” parts of society, was grounds for involuntary sterilization in many jurisdictions. In the landmark Supreme Court decision Buck v Bell, which upheld the state’s right to involuntarily sterilize someone diagnosed with “feeble-mindedness,” Justice Oliver Wendell Holmes wrote the majority opinion, observing “three generations of imbeciles is enough” (Cohen 2016). It is worth noting that Buck v Bell has never been overturned.

German scientists and physicians of the early twentieth century embraced Eugenics and its methods as a functional, scientific, forward-thinking way of dealing with the problem posed by Karl Binding and Alfred Hoche, a German academic psychiatrist and jurist, in their essay Die Freigabe der Vernichtung lebensunwerten Lebens (Allowing the Destruction of Life Unworthy of Life) (Hafner and Winau 1974). Germany, the last of the Western European nations to industrialize and urbanize, had a tradition of universities and academic hospitals that made it the most advanced medical system of its time, a position similar to that held by the United States in the late twentieth and early twenty-first centuries. The disruption produced by the urbanization and industrialization of late Wilhemine Germany, however, produced strains in the healthcare and social service systems that generated a sense of consternation about the future of the German Reich. Large numbers of poorly housed workers who lived in unsanitary conditions and had inadequate food sources led to a general concern that the nation would be swamped by a large number of debilitated and unhealthy people. Coupled with the belief that much of this human misery had a genetic, hereditary basis, an ongoing discussion emerged about what directions to take. While conservative forces argued for better schooling, an immersion in an urbanized form of traditional German values, and improved housing (Sweeney 2006), other forces argued for a forward-thinking, scientific, rational approach to this perceived crisis. Into that conversation, Binding and Hoche asserted that it was legally and ethically permissible to terminate the life of persons with certain degenerative, hereditary, or function-limiting disorders; lives, they argued, that were not worth living. This, in turn, would reduce the stresses on systems that were weakening under burdens difficult to carry.

While their monograph created a large stir, including positive responses in many quarters of public and academic life, it did not contain a methodology to achieve their goal. It was into that space that Eugenics was inserted. The approaches, techniques, and systems developed across the United States were studied, reflected upon, and embraced by increasing numbers of medical academics in Weimar Germany. While we tend to think of the embrace of Eugenics and its derivative, racial hygiene, as products of National Socialism, this would be inaccurate. Large numbers of German and Austrian academics had embraced Eugenics before the seizure of power by the National Socialist Workers Party (NSDAP). Indeed, it can be argued that the rise of the NSDAP was legitimized in German society by the support academics provided when it embraced their principles of Eugenics and grafted those onto the cruder antisemitism that had characterized older NSDAP writing (Aly 2011).

How is it, then, that the most technologically advanced medical system of its era, a place where the world came to study, learn and train, first embraced Eugenics so whole-heartedly, and then became so complicit in the racial hygiene policies of the NSDAP? It would be convenient to think of the so-called Nazi Doctors as exceptional villains who went rogue from the system of medicine. It would also be profoundly wrong. Compared to other classic liberal professions of the nineteenth century (law, clergy, military), or the rising class of merchants and industrialists, or state functionaries such as teachers, postal workers, and civil servants, physicians joined the NSDAP in greater numbers, and represented a greater percentage of their profession, than any other group in Weimar Germany. More ominously, they also joined the Schutzstaffel (SS) in higher numbers and percentages than any other group as well (Aly et al. 1994).

4.3 Eugenic Medicine: From Theory to Practice

How, then, did this happen? While individual choices have been examined by several generations of cultural and psycho-historical investigators (Leonard 2016; Lifton 1988), and have proffered various theories, it might be helpful to look at the climate that the intellectual discussion had created to see what features were present as people considered the crisis they perceived to exist—rising numbers of persons with neurodevelopmental and neuropsychiatric disorders produced by generations of “disadvantageous breeding” (Cohen 2016). We may consider three key elements in the arguments made by eugenicists: a justification for the need to address the problem, an ethical basis for the Eugenics agenda, and the policy implications of that agenda.

The justification for the engagement of Eugenics practices and policies was based upon what we might term a “looming disaster” argument. It was argued that the individuals of “poor stock” would produce ever-increasing numbers of “feeble-minded” offspring, that these individuals would out-reproduce those of “better stock,” and the dwindling numbers of the capable would be left to fund the care of those of insufficient intelligence and skills to fend for themselves (Hafner and Winau 1974). Arguments such as: “The future looks grim; we will see increasing numbers of needy persons and have inadequate resources to care for them” (Binding and Hoche 1920, 7–8) and “We will be overwhelmed by ever-increasing numbers of people dependent upon others to care for them” (Binding and Hoche 1920, 15) became commonplace.

The ethical argument made was that a move away from the ethics of individual encounters and patient care and towards a concern for the whole of society by the provider in the context of their daily work, was required at that moment in order to save society from being overrun by individuals unable to care for themselves. The metaphors used were medical, identifying the society, the body politic, and not the individual in the examining room, as the patient to which the provider now owed the most significant moral allegiance. Examples of these arguments include: “Radical surgery on a diseased patient may seem harsh but it is in his best interest; similar radical surgery must be undertaken as the most ethical approach for the society as a whole” (Ramm 1942, 35–40) and “We must stop thinking about each individual patient and think about the good of the whole” (Ramm 1942, 74). This ethical shift towards thinking about the entirety of society as opposed to the individual patient in the context of medical care was a profound departure from traditional medical ethics and practice.

The policy implications of these ideological changes allowed providers to shift their focus from the individual patient to the good of society as a whole and were represented as the replacement of a sentimental sensibility to a forward-looking, rational, scientific medical care. This can be seen in statements such as: “Individuals always exist in a larger context and must be willing to have their needs placed in the context of the people’s needs as expressed by national policy” (Murray et al. 1999, 981–992) and “We must make decisions at a national level based upon the principles identified here, rather than stumbling along making sentimental decisions we can no longer afford as a people” (Bornstein and Emrich 2001, 97–107).

The transition to these eugenic foundations of medical practice resulted in three distinct changes: (1) providers were inculcated into a mindset that a vast crisis was looming; (2) a justification to move from an ethics of individual encounters to one based on the good of society arose; and (3) prioritizing the health of society was considered forward-thinking, rational, and scientific. The older approach of individualized patient ethics was deemed ill-conceived, naïve, sentimental, and unscientific.

We know where this shift in ethical context of the patient encounter eventually led in the context of NSDAP German medicine. Beginning with the euthanasia of individuals with significant neuropsychiatric disorders and children with progressive degenerative disorders (Aktion T4 and the Kindereuthanasie programs), the goal of medical care shifted from the care of an individual to regarding whole classes of individuals as defective based upon their racial characteristics, their sexual orientation, or their “anti-social tendencies” (Ramm 1942). Rather than striving to give the best life possible for an individual with a neurodevelopmental disability, this new paradigm asserted that such individuals were a defective or disease part of the body politic which must be excised.

4.4 Population health : Examples in Modern Medicine

We may now examine the contemporary movement towards Population health within the context of the moral space of the individual patent encounter. Population health may be considered as the measurement of the health, variously defined, in the entirety of a given group, demarcated by various demographic means. In the current setting, it is most often used to measure the efficacy of a given health care intervention across a group, or to measure the overall effectiveness of a health care system of care provision for a defined group of patients.

Take, for example, stroke and arterial hypertension. We know that these two events are related; uncontrolled arterial hypertension demonstrably increases the risk of stroke, which is a large factor in morbidity and mortality in the US. We also know that certain populations have high incidences of both these events. We can therefore measure the effectiveness of an intervention to improve blood pressure control across a group of people—that is, how many people have blood pressures which come into a desired range after a population-wide initiative has been instituted. We can then track the efficiency of the intervention’s system of delivery if we track rates of stroke after the initiative. Thus, since we know people in lower socioeconomic strata in certain parts of the United States have high rates of stroke and arterial hypertension, we could see if an intervention reduced the incidence of hypertension and thus reduced stroke in those high incidence areas. This, one could argue, is the classic domain of Public health, rather than individual patient care, utilizing the techniques of Population health to measure the efficacy of a group-wide or system-wide initiative aimed to reduce the incidence and prevalence of a significant medical issue.

What happens, however, when Population health metrics enter the individual encounter? This can arise when medical reimbursement schemes are based on Population health outcomes. Various insurance carriers in the US now write contracts for groups of patients that are called “shared risk” contracts. A sum of money is given to a health care system or entity to take care of a group of patients (for example, a hospital and a group of its affiliated primary care providers are given a contract to care for a defined population on Medicaid). This is referred to as an Accountable Care Organization. The contract is written as a fixed amount of money given to the system each year to care for all the healthcare needs of that population, determined as a fixed reimbursement per patient. The ACO does not have access to additional money over the year of the contract—that is, if the ACO spends the entirety of its allotment by the middle of the year, it must perform the rest of the year’s work without further reimbursement. The following year, the contract is re-written based upon how much money was actually spent (the ACO gets more per patient if it stayed below the total fiscal allotment) and by “quality” outcomes across groups (the ACO gets more money per patient if it achieves certain quality metrics). Quality metrics are chosen based upon the most significant morbid or mortal illnesses afflicting the population covered. Population health metrics are thus a way to determine “quality” of healthcare delivered—outcomes not in each individual patient’s instance, but across the entirety of the population.

This has been viewed as both a progressive and scientifically-driven way to improve the health of populations, by creating monetized incentives for improved outcomes. However, there has been an emerging critique of this melding of market incentives and Population health metrics as a force that would lead to the exclusion of the very people it purports to help. Certain populations have been viewed as having healthcare issues that have been recalcitrant to intervention. If we examine that literature, we can see certain ideas reminiscent of those themes we identified previously in the context of Eugenics and racial hygiene: justification, ethical underpinnings, and policy implications.

The epidemic of obesity, with increased incidences of metabolic syndrome, type 2 diabetes, and associated cardiovascular health issues, has been cited as a looming disaster. The following arguments have been set forth with regards to obesity: “We cannot afford to care for this population and achieve other goals as a society” (Bornstein and Emrich 2001, 97–107) and “Without dealing with this looming crisis, our children will be forced to make even more painful choices than what is proposed here” (Murray et al. 1999, 981–992). This language bears more than a passing resemblance to the citations noted above about rising tides of “feeble-mindedness” and invokes the same ethos of impending disaster that will overwhelm our medical care system.

The ethical underpinning of moving towards populations and away from individual patient care has been stated along lines that again sound familiar: “We must stop thinking about each individual encounter, but instead focus on the group as whole, if we are to establish a system that functions” (Ibrahim et al. 2001, 75–81) and “We can no longer afford to consider individual families at the expense of the well-being of the larger society”(Minkler 1999, 121–140). While the move towards a population-facing ethics invokes the traditional Western bioethical principle of justice, in practice it runs the risk of further marginalizing the very groups it suggests it can help. As noted above, the economic uses of Population health in the setting of ACO’s creates powerful incentives for systems to remove populations with difficult to treat healthcare issues from the panel of patients covered; these ethical arguments provide a sort of cover, or justification, for that neglect and removal.

Finally, the policy proposals regarding equity and access to care for all people echo some of the same themes noted in Eugenics and racial hygiene. Examples of these claims include statements such as: “Our current system is leading to disaster, by its widespread access for people who make no organized approach to their own health and well-being. This must be dealt with at a governmental level as policy” (Resnik 2007, 444–445) and “We must take bold action as a society to re-orient our system towards accountability as a prerequisite of access” (Resnik 2007, 444–445). This language takes individuals whose healthcare issues, as difficult as they are, have deep roots in social determinants of health and structural racism, classism and genderism, and finesses them into issues of “accountability”. The critique of the Crisis Standards of Care that were developed in many state jurisdictions in response to the COVID-19 pandemic and a feared shortage of Intensive Care beds and ventilators used similar regressive thinking. Sequential Organ Failure Assessment (SOFA) scores were used in allocation schemes for determining ventilator access when in short supply. Criticism of these methods of allocation point out that people often have disadvantageous SOFA scores due to lack of access to equitable healthcare, and thus are being victimized twice by the same unjust system (Webb Hooper et al. 2020). Thus, we need to distinguish between social forces which underpin a system that relegates groups of persons to poor health outcomes from the assumption that those groups’ exercise of free choice led them to these outcomes. Correlation is not necessarily causation. Eugenics and racial hygiene argued for this flawed comparison. Population health advocates need to avoid it.

4.5 The Role of Informed Consent in Eugenics and Population health

This is not to equate Population health and its many advocates with the Eugenics movement, racial hygiene arguments, and the doctors and academics who engaged so fully with the NSDAP government. It is to say, however, that when we have historical examples of where such arguments can lead, and we can find similarities between those arguments and the current moment, we would be well advised to consider these with care. We can now examine the erosion of Informed Consent in the setting of Eugenics and racial hygiene efforts in NSDAP as well as in the context of Population health . The modern understanding of Informed Consent can be argued to begin with the Nuremberg Code of Ethics, often-cited and nearly as often forgotten. This code was written by the American jurists who presided over the Doctors’ Trial after the Second World War. While other trials in the collective war crimes tribunals in occupied and defeated Germany had jurists from a variety of the Allied nations, the Doctors’ trial was presided over solely by American jurists, and the prosecution was also entirely American. Thus, while international in its scope, we can argue that the results were American jurisprudence at their core. The Code had as its first point that all human medical experimentation had an absolute requirement for Informed Consent: “The voluntary consent of the human subject is absolutely essential” (Shuster 1997, 1436–1440).

From 1932 through 1972, the United States government funded the now well-known and infamous “Tuskegee Study of Untreated Syphilis”, which, built upon the premise of non-treatment, followed the natural course of syphilis in infected black men. The ethical justification for this was the importance of knowing the natural history of an infection in a population that was thought to have a different response to infection than the white population of the US. The study had a complete absence of Informed Consent, not even disclosing to the men that they were being recruited as part of an experiment. There was also a complete absence of adequate treatment for the disease even after penicillin became a proven, identified treatment (Kaplan 2015). When the study was reported in the Journal of the American Medical Association in the 1960s while still in its early years, a physician wrote to the editors to decry the violation of ethics the study constituted. The editors failed to respond to the writer, feeling this was an isolated view of the work (Kaplan 2015). The project investigators of this trial utilized a tactic of deceit, enrolling subjects into the study by providing false promises of effective treatment and requesting that Black medical providers help collect information from subjects without complete knowledge that such information was being used as part of an experiment (Kaplan 2015). This complete negation of the principles of Informed Consent elucidated by the Nuremberg Code was justified on the basis of the importance of the information being obtained, and upon a doctrine of “implicit consent” constituted by agreeing to participate in a trial that required ongoing sample collection. The act of presenting for sample collection was argued to be evidence of this notion of “implicit consent” (Kaplan 2015).

Harriet Washington has pointed out that in a climate of Population health initiatives, concepts such as “presumed consent”, “implied consent”, and “waiver of consent” have eroded the notion of autonomous, informed, and revocable consent that the Nuremberg Code, and the jurists who wrote it, argued was a fundamental, foundational ethical principle (Washington 2021). She notes that this process begins with the issue of tissues taken from a given person and used for purposes of research without their express consent. The example of Henrietta Lacks and her immortalized cells is the most infamous example in the American experience of a waiver of consent. It was argued that the tissues, once removed, could be put to any purpose and did not need her subsequent consent, nor that of her heirs. The removal had been done with consent typical of the day; after that further consent was viewed as waived. This led to any of a number of scientific discoveries, many of which were commercialized, without any consideration of compensation or collaboration with her heirs.

Biobanks, an increasingly widespread phenomenon on the medical landscape, represent a form of implied consent. The individual in question is asked to consent for the original sample, often blood or tissue “left over” from a clinical sampling, that is then banked. Researchers may then use their access to the biobank to use samples without further consent of the subject who offered them. The justifications used for such biobanks are extending the understanding of genetics or other biomarkers of human disease, increasing or improving the efficacy and fundamental mechanisms of various treatments, or slowing or containing the spread of infections during epidemic or pandemic events. The risk noted by many ethicists is the progressive erosion of the autonomy of medical consent by the individual in favor of the development of population-based understanding of disease mechanisms, with significant limitations to the consent of the individual to participate in such research (Washington 2021).

The increasing use of Big Data, pooling the healthcare data of large groups of patients to identify trends, risks, or the evolution of a disease across populations, represents a form of presumed consent. When an individual becomes part of a healthcare system, their data is amassed in an electronic medical record, as required by US Federal law and regulations. Programs in Big Data analytics now access those individual healthcare data and include an individual’s medical information into investigation. These analytic systems presume consent to access and use these individual’s patient data—including personal, medical and demographic information—since the individual presented themselves for treatment. In essence, the choice offered an individual is this dichotomy: to be treated means to give up one’s data and be on the grid; to refuse to be on the grid requires one to refuse treatment. Thus, seeking care means giving up any control over the privacy of one’s healthcare data. The erosion of the autonomous individual offering consent for their participation in a research enterprise is both complete and nearly invisible.

This erosion becomes singularly important in the current move towards a geneticized medicine, with important figures in the biomedical world arguing for universal whole exome sequencing (WES) at birth in order to facilitate the ready development of individualized therapies (such as antisense oligonucleotides) for certain rare genetic diseases (Crooke 2021). It is argued that only with universal WES at birth can we quickly identify individuals with diseases that might be amenable to newer technologies. However, since many of these disorders have no good animal model, the patient in such n of 1 “trials” has a simultaneous phase I, II, and III medication trial practiced on her. Informed Consent, for both the acquisition of data as well as drug development, becomes problematic since the minor child is being committed to a lifetime treatment by the substituted judgment of her parents in consort with biomedicine. The stockpiling of an entire population’s genetic data also leads to significant concerns about who might have access to those data, and for what purpose. The development of an individualized treatment for children suffering from fatal disorders can be argued to be a good. However, a profession of whom the public has reason to be skeptical in terms of its trustworthiness in using and possessing deep and detailed information about members of the public needs to offer clear safeguards and watchdogs over its possession of this data.

We can think of the evolution of the Curative Education Department at the Vienna Children’s Hospital from its origins as a highly patient-centered treatment unit for marginalized children in the early 1930’s under the leadership of Erwin Lazar to its co-optation after the Anschluss by Hans Asperger and his colleagues as part of the machinery of the Child Euthanasia program of NSDAP Germany (Sheffer 2018). Data and information gathered there was put very different uses than its idealistic founders intended.

4.6 Conclusion

We can therefore see that the development of population-based approaches to health care and medical research have placed both the provider and the patient at a sort of crossroads. One direction, invoked in the name of justice and historical exigency for support of the health and well-being of populations, leads to the slow and steady erosion of individual patient autonomy, provider beneficence toward the patient he or she encounters, and the non-maleficence of a system that would enhance individual choice and freedom. An examination of Eugenics is instructive in showing us where such endeavors can lead. The other direction, whose strongest advocates arose from facing the horrors of the racial hygiene medicine of NSDAP Germany, that is, the Third Reich and rejecting them, supports autonomy, but demands much more of individuals, systems, and providers if scientific advancement is to be continued.

The question before us now, as it was a century ago to our medical and ethical forebears, is which path to follow? Will we continue on a path of convenience and less rigor that promises faster results if we are willing to sacrifice some protections and rights for some of our fellow citizens for the benefit of society, or will we insist that human rights cannot be compromised for anyone lest they be compromised for everyone?