Dr. Sandra Soo-Jin Lee: Toward a More Precise Genetics
Guernica / a magazine of global arts & politics
2017-02-27
Lynette Chiu
Brooklyn, New York
The medical anthropologist on the imperative to move beyond race in genetic research and the explanatory power of life experience and inequality.
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…
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