Bioethical Matriarchy: Race, Gender, and the Gift in Genomic Research

Abstract

Abstract: The 2013 sequencing of the epigenome and genome from Henrietta Lacks’s HeLa cell line illuminates the bioethical intersections of genomics, race, and gender. Subsequent announcements by Francis Collins and reports in the scientific media referring to Henrietta Lacks as a matriarch, expose the missing political and resource allocations alluded to by the quasi-viral matriarchal designation, an assemblage I term Bioethical Matriarchy. Drawing from field, media, biomedical archival research, I am concerned with the ways African-descent and matriarchal status reproduce the social order, reflecting racialized and gendered histories of kinship, desire, and status inequality. I address these concerns through an anthropological engagement with African American/Diaspora studies and Feminist technoscientific scholarship in both the social sciences and humanities. I build on Richard Hyland (2014), by arguing that unequal and gendered forms of exchange (re)produce wealth and obligations to give, but not necessarily to reciprocate. I discuss why the bioethical, intellectual property, and legal implications of these asymmetrical relationships necessarily take our discussion beyond issues of consent and inclusion to engaging larger questions of reparative and restorative justice.