“We Wanted to Include Him”: Personhood in One Hispanic Family's Experience of the Genetic Illness and Loss of Their Son

Abstract

This article draws from an ethnographic study to examine the understanding of personhood that emerges as a Hispanic family from Southern Colorado responds to the diagnosis, illness, and loss of a child with a severe genetic disorder. The focus of this article is on the cultural/religious ethos that shaped this family's resistance to the ideologies and practices that threatened to define their son by his genetic disorder and to diminish his value as a person. The case study exemplifies, and is consistent with, other families in the larger study. The concept of personhood that emerges stands in sharp contrast to, and as a critique of, the ideologies and practices of “geneticization” that define and diminish the value of a person with a genetic disorder.