Dr. Sandra Soo-Jin Lee: Toward a More Precise Genetics

Posted in Articles, Health/Medicine/Genetics, Interviews, Media Archive on 2017-03-25 20:30Z by Steven

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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Jane Marchant: A Century of Progress

Posted in Articles, Biography, Media Archive, Passing, United States on 2016-06-15 17:06Z by Steven

Jane Marchant: A Century of Progress

Guernica / A Magazine of Art & Politics
2016-06-13

Jane Marchant

Uncovering the story of a grandmother’s racial passing and its effect on following generations.

It is winter here and there are no leaves in sight. I am standing in front of what was once 684 East 39th Street, once part of Chicago’s Ida B. Wells housing projects. Gray dust swirls to the sides of the roads; it also covers cars. Gray light shines through gray clouds and gray glass litters Bronzeville’s streets, in the South Side. The Chicago Housing Authority demolished my Grandma Barbara’s first home. In place of the two-bedroom apartment that housed my Grandma Barbara, her two siblings, and their mother – and generations after them, as the city’s public housing projects shifted from idyllic dream to dangerous nightmare – are three-story apartment buildings for rent or sale. Demolition of the Ida B. Wells Homes began in 2002 and construction for the Oakwood Shores replacement development is nearly complete. A manufactured park cuts the new housing development in two, Lake Michigan breaks against the shore barely a mile east, and skyscrapers rise in the distance. Barely five months ago, I did not know my Grandma Barbara grew up in Chicago’s first housing projects segregated for black residents. She kept many things hidden from me, and the outside world. Among Grandma Barbara’s secrets was that her mother was black.

I love my Grandma Barbara. I loved her as I grew up in a predominantly-white neighborhood; I loved her when I wasn’t allowed to play with her hair, when she ate peanuts and jelly beans at our dining-room table, and when I understood she and my mother were somehow different from the white mothers around us, but I did not understand why. I loved Grandma Barbara in her hospital bed, as she told the nurses she was from Spain, as she lay dying. I love her as she rests in a jar on my aunt’s mantelpiece. But Grandma Barbara told her children and grandchildren lies about who we are.

I find myself, repeatedly, asking, Why? Slavery’s dangers do not exist anymore. The segregation of Grandma Barbara’s youth does not legally exist anymore. When she was on her deathbed in 2007, she was no longer called a mulatto, my mother no longer called a quadroon; I am not called an octoroon, my children will not be named mustifees and my grandchildren will not be mustifinos. We are not in the French Southern States of the 1800s and my great-grandchildren will never be called quarterons, and their children sang-meles. Our one drop will no longer enslave us all. So what was Grandma Barbara hiding from?…

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