Paper short abstract:

In Tanzania, efforts to teach the patterns of recessive inheritance had resulted in families with albinism realizing the impossibility of their biological kinship. Rather than upend families, however, this knowledge has counterintuitively destabilized the knowledge of genetics and doctors.

Paper long abstract:

In Tanzania, against the backdrop of years of targeted violence against a genetic minority, a burgeoning movement for the rights of people with albinism has led to proliferating questions about the patterns of recessive inheritance. In a context where two black parents can bear a seemingly “white” child and where biomedical and genetic epistemologies are far from hegemonic, bearing a child with albinism has long had the power to unmake and remake traditional Bantu notions of kinship. Recently, however, doctors and scientists working on behalf of albinism rights NGOs have aimed to reduce the stigma surrounding albinism by traveling to villages to teach the patterns of autosomal recessive inheritance. Embedded in their diagrams, charts, and brochures, of course, are biomedical cosmologies and their particular modes of ordering kinship, bodies, and personhood.

This talk centers ethnographic moments in the Mwanza region of Tanzania in which doctors and scientists informed families of the impossibility of their biological kinship—most often in cases where two parents with albinism had a child without albinism. In these instances, newfound knowledge of recessive inheritance patterns led to charged, public realizations of infidelity and lingering questions of paternity that doctors and scientists struggled to navigate, often through interpreters. While in most cases this knowledge did not upend families or destabilize notions of kinship, as activists both feared and predicted, family’s assuredness of their connection had the opposite impact, destabilizing the knowledge of geneticists and leading to cascading questions about what may not yet be known about albinism.