Kirjahaku

Duana Fullwiley has penned an intimate chronicle of laboratory life in the genomic age. She presents many of the influential scientists at the forefront of genetics who have redefined how we practice medicine and law and understand ancestry in an era of big data and waning privacy. Exceedingly relatable and human, the scientists in these pages often struggle for visibility, teeter on the tightrope of inclusion, and work tirelessly to imprint the future. As they actively imagine a more equal and just world, they often find themselves ensnared in reproducing timeworn conceits of race and racism that can seed the same health disparities they hope to resolve. Nothing dynamic can live for long as a blank slate, an innocent tabula rasa. But how the blank slate of the once-raceless human genome became one of racial differences, in various forms of what Fullwiley calls the tabula raza, has a very specific and familiar history—one that has cycled through the ages in unexpected ways.

Duana Fullwiley has penned an intimate chronicle of laboratory life in the genomic age. She presents many of the influential scientists at the forefront of genetics who have redefined how we practice medicine and law and understand ancestry in an era of big data and waning privacy. Exceedingly relatable and human, the scientists in these pages often struggle for visibility, teeter on the tightrope of inclusion, and work tirelessly to imprint the future. As they actively imagine a more equal and just world, they often find themselves ensnared in reproducing timeworn conceits of race and racism that can seed the same health disparities they hope to resolve. Nothing dynamic can live for long as a blank slate, an innocent tabula rasa. But how the blank slate of the once-raceless human genome became one of racial differences, in various forms of what Fullwiley calls the tabula raza, has a very specific and familiar history—one that has cycled through the ages in unexpected ways.

In the 1980s, a research team led by Parisian scientists identified several unique DNA sequences, or haplotypes, linked to sickle cell anemia in African populations. After casual observations of how patients managed this painful blood disorder, the researchers in question postulated that the Senegalese type was less severe. The Enculturated Gene traces how this genetic discourse has blotted from view the roles that Senegalese patients and doctors have played in making sickle cell "mild" in a social setting where public health priorities and economic austerity programs have forced people to improvise informal strategies of care. Duana Fullwiley shows how geneticists, who were fixated on population differences, never investigated the various modalities of self-care that people developed in this context of biomedical scarcity, and how local doctors, confronted with dire cuts in Senegal's health sector, wittingly accepted the genetic prognosis of better-than-expected health outcomes. Unlike most genetic determinisms that highlight the absoluteness of disease, DNA haplotypes for sickle cell in Senegal did the opposite. As Fullwiley demonstrates, they allowed the condition to remain officially invisible, never to materialize as a health priority. At the same time, scientists' attribution of a less severe form of Senegalese sickle cell to isolated DNA sequences closed off other explanations of this population's measured biological success. The Enculturated Gene reveals how the notion of an advantageous form of sickle cell in this part of West Africa has defined--and obscured--the nature of this illness in Senegal today.