For decades, the idea that excavating the genetic origins of disease could transform treatment of the body has lived in the sea of public imagination, buoyant but as yet unrealized. The Human Genome Project, a landmark initiative undertaken between 1990
For decades, the idea that excavating the genetic origins of disease could transform treatment of the body has lived in the sea of public imagination, buoyant but as yet unrealized. The Human Genome Project, a landmark initiative undertaken between 1990 and 2003, identified and analyzed all the genes found in humans, and sowed the potential for new understanding of major illnesses. It engendered hope of a future in which genetic makeup could be the primary factor in determining a person’s care. Researchers could make endless shapes out of a sandbox of data that was blind to race—that problematic and omnipresent variable in the biomedical sphere.
But it is not a simple thing to scrub race from human tissue samples or from the minds of the experts seeking answers, and it remains stubbornly inextricable from genetic research. Investigating the history, intricacies, and implications of this is Dr. Sandra Soo-Jin Lee, a medical anthropologist and senior research scholar at the Center for Biomedical Ethics at Stanford University, who has been studying the role of race in genomic science since the late 1990s. One of her principal interests is biobanks—the various repositories of samples that scientists turn to to test their hypotheses. She identifies them as chronicles of society’s evolving efforts to distinguish between groups; the sorting and labeling of their contents are a collision of the biological and the sociopolitical. The result is the physical matter of thousands upon thousands of individuals demarcated by an inconsistent jumble of terms such as “nationality,” “ethnicity,” and “skin color.”
In her 2015 paper “The Biobank as Political Artifact: The Struggle Over Race in Categorizing Genetic Difference,” published in The Annals of the American Academy of Political and Social Science, Dr. Lee is forthright about the dangers of genetic studies built around samples identified by race. “The unqualified racial labeling of DNA that strips genes of the social context and experience of those who have donated these materials,” she writes, “allows for a pendulum shift in scientific discourse that racializes genes.” Race can end up standing in for factors, such as diet and environment, that go unaccounted for in gene-focused studies. The subsequent findings can then trickle down to affect how we explain differences in disease burden, create health policy, and progress toward eliminating health disparities between populations. With the term “precision medicine” on the rise, referring to a care model that translates insights around genetic variation into clinical practice, the need to inspect and augment how those insights come about has grown more urgent.
Dr. Lee’s work is in direct conversation with the fact that biomedical research has a history of mistreating bodies of color. Perhaps most famous is the story of Henrietta Lacks, an African American woman whose cells, obtained from tissue samples taken in 1951 without her or her family’s knowledge, were mass-produced, distributed to scientists around the world, and are still in use today. Consent may be mandated now, and public health officials are turning their attention to vast inequities across class and race, but the people who would stand to benefit from comprehensive reform may be the most hesitant to donate their cells to further a pipe dream of colorblind care. In a recent study, Dr. Lee engaged with patients from five racial and ethnic groups to explore what institutions can do to foster trusting relationships with research participants.
Crisscrossing a tapestry of ethical and sociocultural quandaries, Dr. Lee has examined the ideology of self-discovery peddled by direct-to-consumer genetic testing companies, and, along with Barbara A. Koenig and Sarah S. Richardson, co-edited Revisiting Race in a Genomic Age (Rutgers University Press, 2008), a collection of interdisciplinary essays about the interplay of emerging genomic technologies and notions of race and identity. We spoke by phone about the insidious presence of race in genetic research, the findings from her conversations with patients, and what has to happen to move scientific conversation and medical care to a place where bodies and the people within them can get the informed, individualized attention they deserve.
—Lynette Chiu for Guernica
Guernica: What led you to study the intersection of race and genomic science?
Sandra Soo-Jin Lee: I became interested because of my previous work looking at intra-Asian colonial identity and how markings on the body become really salient for institutions when they’re trying to make distinctions between populations. Some of my work looking at pre- and postcolonial identity in Japan led me into the area of race and genetics. I started looking through the different repositories that exist in the United States and became very interested in how they were constructed.
Guernica: How are biobanks created and what taxonomies within them make them “political artifacts”?
Sandra Soo-Jin Lee: Some repositories date back decades. Anthropologists have worked with various populations, and individual scientists have their own collections of genetic samples from populations they’ve worked with, and they’ve all ascribed certain group identifiers to those samples. The samples get amassed into a repository, and may be pooled together with other samples collected by other groups in a way that reflects the operating racial rubric. Pooling happens because you need a certain level of power—in the statistical s