Bioethical Matriarchy: Race, Gender, and the Gift in Contemporary Genomics Research

This paper interrogates status ascriptions of Henrietta Lacks as a “matriarch” by Francis Collins of the NIH and repeated in the scientific media. The recent sequencing of her epigenome promised, or threatened, to change the way we understand metabolic adaptation to environmental change and raised more acutely ethical questions about who should profit from that understanding. Race and gender, intertwined within regimes of property ownership, draw an ethical line between exchange and appropriation. Following Hyland (2014), I situate gift exchange in culture, not the law to analyze the complex sets of social relationships that normalize obligations to give and naturalize expectations to receive. In this way, I draw links between slave wealth and genomic biowealth to implicate history, a particular US history of gendered and racialized exchange of bioeconomic consequence. This research presents a narrative about sub-Saharan African genomic diversity in African Americans to illustrate the inadequacy of analyses of race that do not first examine gender. It places attention to how and why race continues to operate productively within a social system of practices organized scientifically by race and extracted economically by gender.

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