The Intersectionality of Race, Innovative Medical Research, and Eugenics
In the twenty-first century United States, laws and social relationships continue to be shaped and reinforced by stark distinctions between different racial groups. Eugenics and public health malpractice have deteriorated disenfranchised communities' trust in public health officials. The mistrust towards medical research and a resulting lack of medical innovation that accounts for racial diversity has a long and complex history that must be understood.
The onset of the Second Industrial Revolution in the late 1800’s drastically changed the livelihoods and lives of many people in the United States. Unfortunately, many white Americans associated industrialization’s negative changes with people of different races and ethnicities. They blamed societal shortcomings and hardships on ‘others’ such as African Americans, immigrants from Southern and Western Europe, Native Americans, and anyone else who happened to look, speak, or act differently than the Anglo-Saxon norms at the time. They considered these individuals to be threats to both their social status and economic well-being. 11
Francis Galton, an English mathematician and Charles Darwin’s cousin, was an early proponent of eugenics. He became a pariah by giving those that felt threatened by these groups a way to justify their hatred. Galton professed that natural selection was not being achieved by mankind. The interventions of people interfered with natural processes. Therefore, “the survival of the fittest” was being held back. Galton quickly became obsessed with intelligence and tried quantifying and predicting it as an inherited genetic trait. He believed the upper classes were destined to have the most worth and he was therefore outraged that the birth rate of the poor was outpacing that of the rich. Galton went on to create early academic standardized testing. However, to his disgust the poor did as well as “the better elements in society” on these tests. Galton was unfazed and spent years working to prove his test was flawed rather than admitting to a flaw in his misguided theory of eugenics. 11
Despite flaws, other researchers and lawmakers built upon the premises of eugenics – ultimately supporting laws that promoted the elimination of ‘unhealthy’ and ‘undesirable persons.’ The field of Eugenics expanded to include new distinctions and definitions such as ‘positive’ or ‘negative’ eugenic actions. Actions were defined as good or bad based on whether they facilitated the preservation of desired properties or their elimination. Efforts to promote ‘positive’ or ‘negative’ eugenic actions were universalized: translated into legislation or attitudes that reflected racial stereotypes and targeted a collective group of people rather than certain individuals. 11
The origins of these theories might be surprising. A common misconception is that eugenics first originated in Nazi Germany. However, a well-established eugenics movement existed in the United States as early as the 1920’s. This impacted lawmaking in the United States. Actions such as the encouragement of fertility amongst those high up on the socioeconomic totem pole were encouraged whereas the forcible sterilization of those from lower socioeconomic groups and communities of color was set into action. Across the United States you could find federally funded Eugenics boards and state-mandated sterilization. 4
From 1910 onwards, the state of California implemented “Asexualization Acts” which instituted the forced sterilization of 20,000 disproportionately African American and Mexican Americans who were loosely defined as ‘mentally ill’. Hitler was aware of such policies and wrote “There is today one state in which at least weak beginnings towards a better conception [of citizenship] are noticeable. Of course, it is not our model German Republic, but the United States”. 12 Some believe Hitler might have drawn upon California’s Asexualization Act when beginning to formulate Germany’s genocidal eugenics policies in the 1930’s. These war crimes of the 1930’s and 1940s targeted ‘undesirable’ groups such as Jews, gypsy, homosexuals, or those singled out as having different forms of purported health defects. 7
These laws had a broad impact outside of Nazi Germany. Another significant turning point in the United States was the Supreme Court Case Buck vs Bell which acted as a legal precedent for state sterilization of inmates in public institutions. The Court argued that intelligence or lack thereof, epilepsy, and ‘feeble mindedness’ were solely hereditary and that inmates should be prevented from ever procreating in a bid to prevent the ‘transmission’ of these defects to the next generation. 5
More surprisingly perhaps was that the Supreme Court reasoned that the mandated sterilization laws under Buck vs Bell were not considered a violation of the Fourteenth Amendment which states that “No State shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States” and “Nor shall any State deprive any person of life, liberty, or property, without due process of law; nor deny any person within its jurisdiction equal protection of laws”.1 Buck vs Bell proved to be an incentive which bolstered the American eugenics movement and instituted the legal authority to sterilize more than 60,000 U.S. citizens across thirty states, with such practices only coming to an end in the late 1970’s. 8
Even though extensively debunked, the legacy of eugenics lives on in twenty-first century America. Race continues to be perceived as a reflection of clear biological or genetic differences. Such perceptions have had an impact on medical research and innovation in the United States. The legacy of eugenics has also impacted the relationships between disenfranchised communities and the healthcare system. Today, mistrust of the healthcare system and the government remains at the forefront of the minds of many disenfranchised communities. This mistrust runs deep and is inherently complex. Research has shown that continuous racial disparities in health, limited access, unaffordability of health care, as well as negative experiences with healthcare providers disincentivizes members of these communities from participating in research studies. Simultaneously, the lack of cultural diversity and cognizance amongst physicians remains another significant contributor to the mistrust of physicians by disenfranchised groups.The consequences of such mistrust are notable because lack of participation acts as a substantial inhibitor to medical innovation and research, and simultaneously helps to prevent further improvements in equity in these fields. 16
This lack of diversity has the potential to hold science back decades. For example, significant investment funds have been poured into furthering genetic knowledge and biotechnological innovation. Recent advancements such as gene sequencing, CRISPR and the 3-D printing of living tissue and organs have caused a paradigm shift in the possibilities that medicine affords mankind. The most ambitious project involving genetic knowledge thus far has been the Human Genome Project, a multidisciplinary international research initiative with the imperative of mapping the entire three billion base pairs of the human genetic structure. The accuracy of such a project depends on attention to genetic diversity.
Such biotechnological innovation can bring many advances but it also has potential risks. These risks become clear if we consider how the legacy of eugenics impacts the current state of healthcare and medicine. Currently there is a lack of confidence in established moral ethical frameworks for guiding the implementation and development of potentially life altering technologies. 16 For instance, consider prenatal testing, which presents the opportunity to identify whether your children are more or less likely to have certain development defects, many of which are genetic. Some examples include Sickle Cell Anemia, Tay-Sachs disease, or Down Syndrome. Many people consider prenatal testing an essential but individual choice for making informed decisions regarding parenting and the implications of raising children with genetic abnormalities. Consider being in a family with a history of Sickle Cell Anemia. Prenatal testing could help you determine whether your children will be affected. If they were affected, several preemptive steps could be taken to ensure you are best prepared for raising them.
However, a more ethically challenging dilemma would be deciding whether or not to conceive children based on the possibility of them having a genetic defect. An individual’s perspective on the ethics of genetic researchers impacts a family’s decision to participate in such testing. A research study interviewed a selection of individuals from disenfranchised groups with regards to their take on the medical innovation and genetic technology that enabled the Human Genome Project. A consistent concern that was expressed was that genetic engineering was, “not an end to a means,” in the sense that it provided a false sense of security.
As of yet we cannot exclusively tackle the causes of genetic disorders or mutations, rather we are only able to identify them and take steps to lessen the impact they might have. This indicates that there must be a balancing act between providing a wealth of information and what might be considered overwhelming someone with non-practical information. It’s also important to remember that predictive science is not always right, and that genetic testing cannot predict every person’s experience as it cannot take into consideration every single possibility. 16
What should an individual do with their genetic information? The legacy of eugenics makes such complex questions even more complicated. As we have seen, eugenics has historically been used to justify unequal and unjust laws. This has led many disenfranchised communities to mistrust genetic researchers. Even worse, those that have consented to genetic research have faced misuse by unethical researchers. Disenfranchised communities who participate in scientific studies have been subject to disproportionate risks. 210 However their assumed risks have merited little ‘compensation’ in terms of reparations for harm done. Such communities have also seen little of the purported benefits of the research conducted. This has been a compounding problem that has limited the accuracy of genetic research, at times resulting in the premature introduction of new technologies without adequate control measures to ensure equitable and protection for groups traditionally taken advantage of. 16
A good example of such problems is the effort to develop the Covid-19 vaccine. The introduction of the Covid-19 vaccines heavily depended on research and development. What is often forgotten are the extensive clinic trials and the role people played in them. The vaccine clinical trials were primarily to determine vaccine effectiveness against SARS-Cov-2 and the potential side effects and safety risks they might cause. 17 Covid trials were subject to varying laws that differed depending on where in the world researchers were applying for authorization. Research that might be given the greenlight in Latin America might be frowned upon or even illegal in the United States. 6 A good example of this is placebo trials.
Generally, placebo trials consist of one group of test subjects who are receiving treatment for a particular disease or ailment. A second group of subjects is given something to mimic what treatment might look like but they do not receive any therapeutic health effects. In the United States when conducting clinical trials for something that can prove fatal such as Covid-19, trials must intentionally incorporate some form of treatment so that no one is left without treatment. 17 In 2020, protests over Covid-19 vaccine clinical trials erupted across South Africa over suspicion that the trials would cause undue harm. The protests clearly illustrated public disgust and frustration associated with the history of medical trials in Africa. For instance, in South Africa during Apartheid an entire branch of government was carved out in order to subjugate ‘anti-apartheid sympathizers.’ One of their openly advertised goals was to develop contraceptives that would covertly render dissenters infertile without their consent or knowledge. 9
The protests showed that deep-rooted mistrust and suspicion of government and healthcare entities is not unique to the United States. Similar distrust is vividly present in other formerly colonized countries, such as Brazil. In 2021, clinical trials for Pfizer’s covid vaccine were conducted in Brazil which made many Brazilians feel incredibly lucky as they believed being involved in the trials would bring some sort of risk-benefit. Many hoped that Brazilians would get early access to vaccines or have the price of the vaccine subsidized. Ultimately however, geopolitical inefficiencies, inaccessible prices of the vaccine, as well as intellectual property patents prevented Brazilians from acquiring the vaccine they helped develop. 13 Numerous attempts were made to address these bottlenecks and imbalances, however discussions about vaccine equity at the World Trade Organization were blocked by many rich nations and by the lobbyists from billion-dollar vaccine companies.
Consider the following. In September 2021, the World Health Organization set the ambitious target of having 70 percent of the world’s population vaccinated by mid-2022. Back then a meager three percent of low-income countries had been vaccinated with one dose, in contrast to 60.18 percent in high income countries. Over a year later we are nowhere near accomplishing this goal, with the African continent just barely having reached eleven percent percent vaccination with two doses, the former gold standard of vaccination in 2021. 313 The recommended dosage has now risen to three, making this percentage even lower. Clearly, restricted access to vaccines have had global consequences. With Covid-19 infections reaching an all-time high of millions of cases per day worldwide, the persistent threat of new emerging variants which are more infectious and deadly remains very real. Equitable vaccine distribution internationally would help dramatically reduce the longevity of the pandemic.
This leads us back to the legacy of eugenics in the United States, which has impacted both individual access to covid vaccines and access to cutting-edge healthcare more generally. Within the United States there is a clear economic imbalance across racial and ethnic groups. African Americans and Latinos have considerably less wealth (taking into account debt) than white Americans with comparable incomes. Hence, it quickly becomes apparent that those with greater disposable incomes, access to premium health insurance, and flexibility with resource allocation would be better poised to take advantage of the age of medical innovation, readily accessible genetic information, and technology. 16
In turn, these factors combined to allow disenfranchised groups to fall further behind, exacerbating current inequities. Whilst there exists the possibility of inequities being distributed throughout explicit and intentional actions; one must not forget that the choices made by lawmakers, researchers, and individuals in the United States have been conditioned through the nation’s pervasive racialized perceptions. Through the advent of slavery, colonization, and subjugation, people in the West has been programmed to constantly notice hierarchies based on racial, ethnic, and socioeconomic class. Such hierarchies inadvertently assign different values to members of those groups in an abstract and unjust manner. Like the old, debunked link between intelligence and particular racial groups, there now exists the perception that there might be the inherent risk of genetic ailments being predominantly associated with a particular racial group. 15 There is a real posibility that such findings may cause further discrimination. While there is much to gain from genetic information, such as early prevention, detection, and treatment, we must also consider historical context before making policy decisions. 16
As we move onwards from the Covid-19 pandemic and into an era of renewed genetic research, it is essential that we adequately regulate the appropriate use of genetic information, medical innovation, and technology. This will ensure the well-being and rights of participants. It will also help facilitate the adequate dissemination of benefits derived from these fields across population demographics. This will no doubt go against the bottom line of corporations and monopolies in the pharmaceutical industry, private research and development, and the insurance industry. All of these groups are engaged in an ‘arms race,’ competing against federally and government sponsored research to achieve new discoveries. This is the case because private companies know that if they get the upper hand, they can use the genetic information derived and the technologies created in whatever manner suits them best. 7
Equitable and readily accessible information is key. The spread of information is essential to curtail exploitative measures. Better public information allows people to comprehend risk and make use of the benefits associated with these technologies. For this reason, the discernment of information goes hand in hand with education and improved institutional communication. It is important to note that such programs will vary across economic strata and cultures. Future researchers must therefore tailor information to specific groups and audiences rather than assuming uniform education and access. For some people, the media is the only source of so-called ‘education’ and this can prove incredibly dangerous. Therefore, it must be a priority to implement a variety of initiatives that facilitate the disbursement of high-quality information through several mediums, at appropriate levels. Information that is provided must be accessible as clear language enables a wide demographic to make informed decisions. This may be the most feasible way we can begin to repair the disintegration of public trust caused by the legacy of eugenics and how we can move towards a more equitable future. 16