Reflection on 2018 Star Nelkin Award

The Star Nelkin Award

by Ruha Benjamin

The 2018 Star Nelkin Prize committee (Santiago Molina, Michelle Smirnova, Justin Farrell, and Ruha Benjamin) received 17 submissions which included a wide variety of topics and methodologies, reflecting the vibrancy of SKAT!

The committee gave an honorable mention to Angela Frederick for “Risky Mothers and the Normalcy Project: Women with Disabilities Negotiate Scientific Motherhood,” Gender & Society, January 2017.

This year’s winners were Daniel Navon and Gil Eyal for their paper, ‘Looping genomes: Diagnostic change and the genetic makeup of the autism population. Navon and Eyal’s paper, published in American Journal of Sociology in 2016, breaks new ground in the social studies of biomedicine. ‘Looping genomes’ shows how ideas about the genetics of autism drove changes in diagnostic practice, and how those changes, in turn, transformed the genetic makeup of the autism population. It is a rare combination of theoretical innovation, novel empirical research and important findings. An especially important contribution of the paper is to devise a novel empirical strategy, which demonstrates that the genetic heterogeneity of autism has increased over time due to the looping processes described above. Navon and Eyal do so by examining the reported rates of autism in “genomically designated” conditions – disorders that are delineated strictly according a particular genetic mutation. They created a unique dataset of published biomedical research about 12 such conditions, three of which are also examined more carefully as case studies. What they find is that in all these conditions but one, the reported prevalence of autism has increased over time, often quite dramatically from zero to upwards of 80%. Since the cause for the symptoms is held constant – throughout the period of study, each condition is defined by the same mutation – Navon and Eyal argue that increased prevalence must be due to changed diagnostic criteria. In this way, they provide a rare empirical answer to the all-important question of the enormous expansion of autism in recent decades, while also documenting a remarkable looping process transforming the genetic makeup of the autism population: as autism became a more expansive kind of person, it grew to include people with genomically designated conditions that were long considered unrelated or even diametrically opposed to autism. In sum, ‘Looping genomes’ opens up new terrain for social studies of science in its engagement with biomedicine. It gives us the tools to go beyond debates about the social construction of illness and disease to reveal a dynamic, empirically tractable interplay between biomedical research, medical classification, patient identity/advocacy and the biological makeup of populations.