The history, and continued existence, of racist practices in science and medicine have been undergoing long-overdue scrutiny in recent years. From the adaption of The Immortal Life of Henrietta Lacks for the small screen in 2017, to a continued reckoning with the US history of sterilizing racialized communities, to a discussion on the presidential campaign trail of black women’s maternal mortality rates, the medical establishment’s alternate neglect and violence toward racialized populations is finally being brought to light.
Faced with increasing popular awareness of this history, scientists, academics, corporations, and government officials have converged on genetic science as the solution to questions of racism in health care. This trend sees genetic science as a vehicle for targeting research, health regimes, diets, vitamins, and supplements to populations historically neglected by traditional medical and health science — namely raced and marginalized minorities. But this trend, which I call the “genetification of race,” is also having the perverse effect of re-entrenching race as a socially and biologically “real” category.
Examples include research like the Kaiser Family Foundation’s “Key Facts on Health and Health Care by Race and Ethnicity” primer, and scientific studies that seek to establish links between racialized groups and the prevalence of diseases like prostate cancer. These studies use racial categories in a simplistic way, without adequately acknowledging that the real causes of disease are environmental, structural, and political — but have been made to manifest in racializing ways.
In turn, these racial categories are increasingly relied upon even though the science behind DNA-centered medicine is far from undisputable. Meanwhile, the great hope that genetic medicine will provide a panacea for ill health has helped corporations and the state distract from the need to invest in public health systems, deal with social disparities, and address the class structures that give rise to health inequalities in the first place.
Rather than relying on the genetification of health, we should deal with the “social determinants of health.” These determinants cleave along racial lines not because of biology and chance, but because of history and the choices of people in power. This has resulted in racialized groups suffering from disproportionately high levels of stress, and a lack of access to nutritious food and clean water; spaces to remain active; education; timely, high quality health care; safe living and working conditions (including in regard to pollution); and physical and financial stability. Inequality doesn’t live in DNA; it lives in capitalism’s social and political structures.
The Problem and the Science
In discussing genetic health, both science and the Left must consider the following factors, all of which are in tension with one another:
- The existence of clear scientific evidence that race has no biological basis (in fact, there are more genetic differences within racial categories than between them);
- The persistence, in formal and popular science, of race being used as a convenient proxy for categorizing populations (even when biogeographical or ethnic categories are utilized as replacements — since classifications like European, Asian, and African remain raced); and
- The unfortunate reality that despite the fact that race is a social fiction, it has material consequences. With respect to health, this manifests in very real disparities wherein groups racialized as black and Hispanic in particular suffer from higher rates of general mortality, cardiovascular disease, cancers, diabetes, asthma, and a whole host of other deleterious health conditions when compared to the “white” population.
To move toward a model that incorporates these realities, it is important to understand the basic science underlying the genetification of health. The current means by which companies, scientific institutions, and even genetic testing corporations have been doing this work is by mapping single-nucleotide polymorphisms (SNPs), which are variations of DNA base pairs, among individuals related to particular diseases. This, it is hoped, will lead to a more fine-tuned sense of which groups and individuals are more likely to suffer from particular diseases, as SNP patterns could help identify at-risk populations and treat them more efficiently.
There are, however, several problematic assumptions behind this logic. These include the assumptions: that the genetic data collected from people in different geographical locations can be said to be representative of past as well as existing phenotypically similar individuals (and which also retain problematic notions of racial “purity”); that the sample sizes that serve as reference populations are anywhere near large enough; and that genes work in isolation rather than in conjunction with lifestyle, the environment, and multiple networks of other genes.
The belief that we can tackle racialized health disparities through genetic science is both unfounded and disconcerting. It is often the case that even the diseases popularly believed to be linked to certain racialized groups do not, in fact, have anything to do with race. As Charles N. Rotimi and Lynn B. Jorde argue:
Well-known examples include the elevated prevalence of Tay–Sachs disease among persons of Ashkenazi Jewish ancestry and sickle cell disease, thalassemia, and glucose-6-phosphate dehydrogenase deficiency in some populations of African descent. However, Tay–Sachs disease is observed in non-Jewish populations and has a relatively high prevalence in parts of French-speaking Canada.
This has led to fundamental misapplications of the science, misdiagnoses (particularly when individuals may show all the symptoms of a condition but not fall into prevalence categories), the stigmatization of individuals phenotypically associated with certain diseases, and, critically, the doubling down on our tendency to read race into our DNA.
A further issue is how the genetification of health can be used for profit. Ancestry testing companies like EasyDNA and 24Genetics — which offer dubious health and nutritional recommendations based on their tests — are obvious beneficiaries. Perhaps more ominously, pharmaceutical companies are poised to capitalize on the phenomenal rise of race-based medicine.
A key example is the patenting of BiDil, a combination of two preexisting drugs (whose patents were about to lapse) to treat heart failure in black patients manufactured by the company NitroMed. It was later found that the drug’s trials did not establish that race was a factor in its efficacy since there was no comparison group (they only tested black patients), they relied on the reanalysis of older data, they had been granted a lower level of evidentiary requirements, and they paid little to no attention to environmental factors. Thus, under the pretense of serving an underserviced population, BiDil has helped again reify racial differences — while conveniently extending NitroMed’s patent.
The solution consists first and foremost in a radical restructuring of genetic science such that race is no longer used as a proxy for difference. This approach is not only scientifically uninformative, it also reaffirms race as a “real” biological category that then stigmatizes populations associated with certain diseases, reinforcing the basis for systemic racism.
Also needed is a wider understanding of how genes work as one factor among many that cause disease. These include general lifestyle; biological factors (as genes don’t exist in isolation, but interact with other genes, with proteins, and with the environment); socioeconomics; lack of access to health care; health-care providers’ implicit biases; and structural issues such as “government and corporate practices, area-wide measures of pollution or violent crime, features of the built environment such as transit systems or food deserts.” We could even consider influences that are more national, such as the health effects of industrialization and urbanization.
This would place the onus on addressing ill health where it belongs. Not on racialized individuals who are blamed for the choices they make or are seen as victims of their biology; but on the state, which must address structural inequalities and environmental racism, facilitate access to health care, and regulate the ability of companies to profit off of distorted science.
Finally, we need to better understand the role these racialized practices play in producing ill health. Barbara and Karen Fields define the basis of racism as what they call “racecraft”: a kind of conjuring trick through which racial classification went from a “way of isolating a few of the surface features of near-infinite human diversity” to “over-generalizing them into an architecture of biological, social, and even metaphysical difference.” The genetification of health, by constructing a medical “architecture” of difference, could be seen as its own form of racecraft. By using the vast resources of the medical establishment to further racialize vulnerable populations, we may only be entrenching racism and its consequences.
We must engage with genetic science as one part of a complex network of factors that determine health. We must approach race not as a scientific means to understand and ground human difference, but rather as a product of racecraft. And we must push the state to challenge the structural forces that negatively impact health. Working toward these objectives seems like a much more fruitful and socially just way to transform the health of racialized populations for the better.