Racism as Medical Malpractice: Henrietta Lacks’ Cells

Henrietta_Lacks_(1920-1951) (Source: Wikipedia)

Interesting article over at RaceWire (racewire.org) about the unbeknown and unrequited contributions of Henrietta Lacks to the field of science. In 1951, exactly 58 years ago yesterday, Mrs. Lacks died of cervical cancer. Just 3 years later, cells from her body were cultured at Johns Hopkins into the “HeLa cells” now used as the standard vaccination for the polio virus. The kicker? The cells from Lacks’ body were used without her consent, without her knowledge, and without any reparations to the Lacks family. As stated,

While the cells were commercialized early on, and have recently been used to create a whole new lucrative industry of gene mapping the family of Mrs Lacks has (of course) never been offered any part of the wealth. They have only been asked to contribute yet more cell and blood samples, ‘for the good of science.

And it was not until 2001 that Johns Hopkins scheduled an event to honor Lacks’ contribution and to thank her family. Unfortunately, the event never happened.

This reminds me of the countless Black men exploited by white scientists in the infamous Tuskegee Syphilis Study of 1932 . This study, arguably the most despicable and atrocious example of state racism, eventually led to the 1979 Belmont Report, which is now standard operating procedure for scientific research with human subjects. However, the fact that the study continued under various supervisors until it was leaked to the press in 1970 bears testament to the enduring (white) logic of science and racism. In both Lacks’ case and the Tuskegee study, Black bodies were seen as expendable commodities by white researchers, who took advantage of their subjects and in the case of the Tuskegee study, ultimately killed them, their families and spouses.

As we have often argued on this blog before, American wealth and privilege has been born out of the sacrifices and injustices of people of color, particularly those of African Americans. It is striking how many Black Americans suffer from health inequality today despite their contributions to the very medical procedures and vaccines we now take for granted.

Why does the field of science proclaim objectivity in the face of such incontrovertible racism? Can we really tease out our sociocultural biases and prejudices when conducting scientific research?

Race, Genomics & Health

The October issue of the journal Social Studies of Science has an excellent special issue on race, genomics and health that’s well worth checking out if you have any interest in race or in science and technology studies (hat tip: Julie Netherland).  The introductory piece is by Joan H. Fujimura (UW-Madison), Troy Duster (NYU), and Ramya Rajagopalan (UW-Madison).  The authors frames the volume around contemporary genetics research on race, ancestry, population, and disease.  A key theme that weaves the articles together is the tension between those scientists who argue that their research does not biologize race, and those who argue that their findings do demonstrate racial differences.  Fujimura and colleagues explore what this tension might mean for our understanding of race and for science and technology studies.

All the articles in this volume are really exceptional, and I’d like to highlight a couple that I found particularly interesting.   In “Bare Bones of Race,” Anne Fausto-Sterling examines what she refers to as “claims of racial difference” in bone density studies to explore what she calls the “architecture of racial difference in bone health and disease” (p.658).   While most of Fausto-Sterling’s previous writing about the social and the biological has dealt with sex and gender, here she applies a similar analysis to race.   She contends, rather provocatively, that:

“Rather than relying solely on efforts to understand the body from the inside out, I argue that medical and social scientists should reverse course, and investigate the body from the outside in, thus bringing the social components of disease formation back into the discussion” (p.658, emphasis in the original).

As with the devastating critique of the way that medical and social scientists have used scientific knowledge to sex the body by reading social categories that presume a gender binary onto biological categories that do not exist as a binary, Fausto-Sterling makes an equally persuasive case here about race.   An expert in molecular biology, and with a finely honed analysis of the social world, Fausto-Sterling’s analysis of the bone density literature is both compelling and surprisingly approachable.

Still, social constructionists such as Fausto-Sterling face an uphill, even Sysiphean, struggle if their goal is to persuade a wide audience that “race” is a social construction that does not exist as a meaningful, genetic category.  And, perhaps the place that many people become familiar with genetics as a window on race and ancestry, is through efforts like the PBS-sponsored Skip Gates project, “African American Lives,” which engaged a number of celebrities (most notably Oprah), to participate in genetic genealogical testing (Oprah learned that her assumptions about her African origins residing in the Zulu nation were wrong).

Although she doesn’t address the PBS television series specifically, Alondra Nelson (Yale),  in “Bio Science: Genetic Genealogy Testing and the Pursuit of African Ancestry,situates such racial projects as originating with Alex Haley’s (1976) best-selling book and subsequent television series, Roots: The Saga of an American Family.   Nelson writes that Haley’s work “established an expectation among a generation of readers and viewers, in the U.S. and abroad, that recovering ancestral roots was not only desirable, but also possible” (p.763).   And, she goes on to note that many genealogists of African descent often site Roots as the prompt for beginning an ancestral quest.

Nelson’s analysis draws on ethnographic fieldwork and interviews with African-American and black British consumers of genetic genealogy testing, and she uses this qualitative data to make a nuanced argument about the way that race is, and is not, deployed.   For American and British black folks that Nelson interviewed and observed, there is some acquiescence to genetic notions of  ancestry and ‘race,’ yet at the same, those of African descent who took genetic tests also resist purely biological interepretations of these results and construct their anecestral narratives in such a way that they are in line with what Nelson refers to as “genealogical aspirations,” that is, what people hope to learn about their ancestry.  It’s a fascinating, if dense, article with an well-crafted argument.

I’m struck, as ever, by what an asymmetrical quest genetic geneaology is, which Nelson signals in her subtitle, “the pursuit of African ancestry.” The asymmetry I’m referring to is that there are very few white people who are trying to trace their ancestral lineage in this sort of race-conscious way, often specifically and purposively through slavery.  Instead, when white people trace their ancestry it’s often in the language of a “race-blind” narrative that traces “family” without acknowledging race or slavery.  There are a handful of exceptions to this.    Ed Ball, traced his family’s slave-owning heritage, as did the white DeWolf family who traced their lineage back to their New England slave-trading ancestors.   But this sort of racial project carries with it much different “genealogical aspirations,” to use Nelson’s phrase, than those of the people in her study.   I would argue that for people of African descent to trace their lineage is one that holds with it the promise of a kind of redemption of a history of oppression and reclaiming it within a context of racial and ethnic pride; whereas for white people of European descent, tracing their lineage requires either ignoring race altogether or examining a painful legacy of racial oppression with our ancestors playing the role of the oppressors.

Taken as a whole, the special issue of this journal often implicates whiteness yet  “whiteness” as a racial category remains largely unexamined.  My points about this asymmetry and the unexamined quality is evident in the PBS series I mentioned,  “African American Lives.” Included in that series, is Bliss Broyard.   Broyard learned after her father’s death that he was “part black” and has written about this in a number of places, including a book called One Drop: My Father’s Hidden Life — A Story of Race & Family Secrets (2007).   In the interview with Gates following the results of her genetic test, Gates reveals to Broyard she has “17.8% African ancestry,” and then asks, “Does this make you black?”    Broyard answers thoughtfully and says that she feels like a “cousin to blackness,” and that this is a lived experience rather than something rooted in DNA.  She ends up by saying, “I’m a person of mixed-race ancestry, but I don’t think I’ve earned the right to call myself ‘black.'” Broyard couldn’t have answered better, but the problem really, in my view, is the question that Gates poses.  What’s of interest about Broyard and her story is the “one drop” of African ancestry, not the 78% of her European ancestry.  By setting up this genetic, geneaological quest (and a television series around it), this racial project continues to locate “race” at the genetic level and leaves whiteness unexamined.