Is the way to end racialized disparities in health care to racialize genetic medicine?
According to statistics in published papers on the website of the National Center for Biotechnology Information, there’s a wide disparity between the health of whites and nonwhites in the USA. The report Communities In Action: Pathways to Health Equity details the glaring inequities in our society’s health. Diseases such as obesity, heart disease, cancer and HIV disproportionately effect minority communities. The inequities begin at birth:
While national infant mortality rates decreased overall by 14 percent from 2004 to 2014, disparities among racial and ethnic groups persisted (NCHS, 2016). For indigenous populations, infant mortality rates are staggering. Native Americans and Alaska Natives have an infant mortality rate that is 60 percent higher than the rate for their white counterparts (HHS, 2014).
Faced with such a daunting social problem, science has come to the rescue with the promise of using DNA to identify and treat communities most in need. However, the solutions seem to ignore the larger context of the problem as well as to perpetuate some of the issues that have created it.
The Picture of Public Health
This situation is pretty much the dictionary definition of racism: one’s well-being in society is determined by the group to which one belongs. White people are healthier and have more access to health care than nonwhites. As with income and wealth disparities, we can’t downplay them with ad hoc explanations about racial traits. The Kaiser Family Foundation’s studies of health disparities typify efforts to raise awareness of how ethnicity impacts health.
As Jacobin magazine reports, scientists are now approaching this phenomenon by using genetics to target at-risk populations and tailor treatments to them. The fields of pharmacogenomics and pharmacogenetics focus on how patients’ genes affect their response to medications and how their inherited metabolic pathways are relevant to treatment programs. These areas of study promise to provide health care that’s less one-size-fits-all and more appropriate to the patient and to the populations most in need of attention.
This emphasis on genes over environment should bother us for many reasons.
Shades of Gray
First and foremost, it threatens to establish racial categories. The idea of race science, even motivated by methodological convenience rather than prejudice, is understandably problematic. Aside from that glaring ethical issue, there’s the understanding among geneticists that racial categories are illusory. According to the NCBI,
In any scheme, the idea of racial identity is a probabilistic one. Different groups are not delineated by clear and unambiguous borders but shade into each other along gradients. Strict categories, exclusive and exhaustive, in which each human being is assignable without ambiguity to one and only one race on the basis of genetic characteristics, are unattainable. Thus, genetics cannot provide a single, definitive human classification scheme with which to address the many facets of health differences.
The complexity of ethnicity, including the degree of genetic variation within self-identified ethnic groups, raises ethical problems with personalizing treatment:
[T]he need to define genetic profiles of individuals before individualizing treatment may cause unforeseen ethical issues for subjects and patients. In addition, we are at the start of an age where some drugs will only be licensed for use in specific groups of patients specified by genotype; the concept that ethnicity (or even ancestral country of origin) may also dictate prescribing guidelines, either independently or taken together with genotype information, should also be the subject of debate.
Even the groups studying the phenomenon of health disparities are cautious about using ethnicity as a determinant of health care access. The Kaiser Family Foundation warns that ethnic background is just one of many factors causing disparities:
Health and health care disparities are commonly viewed through the lens of race and ethnicity, but they occur across a broad range of dimensions. For example, disparities occur across socioeconomic status, age, geography, language, gender, disability status, citizenship status, and sexual identity and orientation. Federal efforts to reduce disparities focus on designated priority populations who are vulnerable to health and health care disparities, including people of color, low-income groups, women, children, older adults, individuals with special health care needs, and individuals living in rural and inner-city areas. These groups are not mutually exclusive and often interact in important ways. Disparities also occur within subgroups of populations. For example, there are differences among Hispanics in health and health care based on length of time in the country, primary language, and immigration status.
The Business of Well-Being
As if the moral and methodological problems with establishing racial categories weren’t sufficient cause to be skeptical about gene-based therapies, there’s the matter of making health all about genetics and ignoring the environmental and structural aspects of health disparities.
Using genetics to combat disease and health disparities doesn’t deal with the most intractable causes of either: the environmental and socioeconomic factors having to do with inequality in American society. There were problems with the Affordable Care Act, but its emphasis on expanding coverage was a solid first step toward decreasing health disparities. Unfortunately, the Trump Administration’s insistence on dismantling Obamacare will perpetuate the differential access to coverage that contributed to the health disparities the ACA was implemented to solve.
Genes are only one factor among many that affect well-being, and using genetic methods as the basis of health care transforms health and health disparities from social problems requiring policy decisions to an individual’s personal problem to be solved through consumer health care options. Jacobin stresses the need to redefine the issue in the context of a community project:
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.
Data and Disease
Genetic medicine is promising for many reasons. However, we should be careful to use it in ways that benefit communities and not corporations. The ability to “identify at-risk populations” has the potential to allow corporations to profit from genetic information as well as create racial divisions that we should be striving to erase.
Science should be an important aspect of an equitable public health policy, not a substitute for one.