Race and medicine have a long, fraught history. From eugenics to social Darwinism to medical experiments on slaves, the use of race as a basis for medical decisions has been popular among physicians, but has often been marred by inaccuracies or devolved into outright racism. The burgeoning field of precision medicine, however, with its science-fiction sheen, seeks to reveal and disentangle the social and genetic health factors that race only approximates.
While recent advances in medicine have made the field more sophisticated and less overtly racist, race can still present problems. Self-identified race does roughly correlate to some of the genomic, ancestral, and environmental factors that affect health––sickle-cell anemia being one example––and doctors have gotten better at dealing with race as a data point. But even now, race can offer contradictory evidence or even produce physician decisions that lead to harm. Disparities between races persist in almost every measurable health outcome. Part of the difficulty is that race is a social construct that only partly reveals scientific information about a patient.
Precision medicine may be able to overcome some of these challenges. Can it achieve a post-racial medical future?
Despite some advances, this new approach to medicine is still in its frontier stages. A new perspective in The New England Journal of Medicine from National Human Genome Research Institute (NHGRI) researcher Vence Bonham and his co-authors, details how the first race-based drug, the heart-failure therapy BiDil, was approved by the Food and Drug Administration for black patients only a decade ago. Researchers have identified several medicines that have different effects for members of some races and may not even work for others, including several drugs for heart disease and blood thinning such as Plavix, which may be less effective in people of Asian descent compared to other ethnic groups. But while race has become more common in considering what drugs to prescribe, official recommendations, regulations, and standards are sparse, and many pharmaceutical research efforts have not trickled down to physicians’ daily interactions with patients.
The field of precision medicine aims to accelerate the gains of this trend in health care. It significantly amplifies the data on patients available to physicians. “Precision medicine is not just about genetics and the individual genomes,” Bonham told me. “It is about a wide variety of behavioral [medicine] and lifestyle medicine, and how genes interact with the environment around them.” The aspect of precision medicine that makes it “precise” is knowledge of a patient’s genome, which, in concert with environmental factors, can predict how the patient might respond to certain drugs.
The NHGRI-led team of researchers––Bonham, Shawneequa Callier, and Charmaine Royal, a rare team in this field comprised entirely of people of color––emphasized the limits of current applications of race in medicine.* “Providers seeking to provide the best care possible for their patients use many types of heuristics to help them in making decisions,” Bonham told me. “Race is often used in screening decisions and in decisions with regard to what drugs to start an individual on. But when you start to use that for a whole group, there may be some individuals that will benefit from that approach and some who will not.”
Precision medicine's potential can be seen clearly in the cases of many black, Latino, and Native American patients, whose genetic ancestry often differs wildly from patient to patient. For many of these patients, a prescription based on self-identified race and a prescription based on genetics might look entirely different. Social concepts of blackness, especially, often defy any sort of meaningful genomic profile. The Ebony senior editor Jamilah Lemieux’s account of how she found out through genetic testing that the majority of her genetic heritage is European––despite having two parents who identify as black––is not atypical.
Precision medicine could provide another tool for addressing widespread health disparities that occur along racial lines. Genetic, environmental, and behavioral data will improve researchers’ and physicians’ understanding of how much each factor contributes to health outcomes. This information is vital not only for prescribing drugs, but for tailoring therapy to fit the needs of individual patients. If racial medicine can roughly predict that black patients are more likely to suffer heart disease and respond to certain medicines, precision medicine gives physicians the dexterity to identify a patient’s individual risk and prescribe a therapy––including but not limited to drugs––that uniquely fits that person.
The question is not whether precision medicine will supplant self-identified race as factor in physician decisions, but when. President Obama’s Precision Medicine Initiative pours hundreds of millions of dollars into “the intersection of human biology, behavior, genetics, environment, data science, and computation.” It establishes a cohort of 1 million participants whose data will form the backbone of precision-medicine databases, and is committed to ensuring diverse representation. Bonham sees these and other developments as a paradigm shift in health care.
“I actually think that we are in the midst of a revolution that’s occurring,” Bonham said. “The new drugs that are coming out and that are being approved as precision medicine drugs by the FDA, that number is growing fast. And I see the next 10 years as really shifting how we use race in drug treatment.”
Precision medicine may prove instrumental in creating a post-racial medical future, but there are real obstacles. The research team identified costs, data quality and representativeness, and physician readiness as the main barriers. If those factors are not addressed, precision medicine might reinforce the current state of racial segregation in health care.
“One of those challenges is making sure that there’s diverse ancestral populations and social and cultural backgrounds participating in the research so that we have as much information available to help identify how specific drugs and specific information can be useful for different groups,” Bonham said. If underrepresented and marginalized populations do not participate in the research and database-building, knowledge of medical best practices will remain skewed towards white patients and the therapies that work best for them.
Access issues could persist and deepen racial divides in medicine even if the data pool for precision medicine is broad and diverse. Bonham’s previous research indicates a serious lack of familiarity and comfort among physicians about genetics. This could wall patients off from access to effective therapies. Even though precision medicine is becoming more and more accessible, it requires money, time, equipment, and expertise. As is usually the case in America’s health-care system, these resources are scarce among providers who care for people of color.
As computing and data storage become cheaper, the biggest infrastructure limit to precision medicine will not be cost or capability, but security. While the Obama administration is working on a framework for privacy and data security in precision medicine, privacy risks are difficult to predict. Knowledge of a person’s genome, ancestry, background, environment, and personal identifiers is about as deep a treasure trove of personal data as can exist. As useful as it is in medicine, it could be equally valuable to hackers and unscrupulous corporations. As has been demonstrated in several other big-data initiatives, privacy is especially a concern for already vulnerable communities of color. Discrimination based on leaked health data could compound existing discrimination, and people of color have much less access to advocates and legal structures that can provide recourse for any breaches.
Health disparities in heart disease, cancer, and overall mortality between people of color and white patients have proven stubbornly persistent despite advances in how patients are considered and cared for. There is a future in which precision medicine could offer ways to end the variation among self-identified racial groups. This is the future for which Bonham’s team advocates. There is also a possible future, however, in which precision medicine becomes another technological advance that helps increase the lifespans and health of wealthy white people while leaving everyone else decades behind.
The obstacles that complicate the precision-medicine “revolution” illustrate why self-identified race is such a common medical data point in the first place. It costs no money, physicians and patients believe they understand it, and it is roughly predictive of some genetic, environmental, and cultural health factors. Even in medicine, race will always exist––and as Bonham notes, so will racism. It will probably shape physicians’ decisions for the foreseeable future. But precision medicine, despite its challenges, does present a powerful new framework for physicians that could ease health disparities. Hopefully for better, perhaps for worse, it is the future of health care.