Questions of kinship and inheritance in pediatric genetics: substance and responsibility

Abstract

Pediatric genetics is growing in significance as a tool to explain childhood illness and disability. Within both medical sociology and anthropology writers have explored whether investigating genetic inheritance can overemphasize biological connection over other versions of kinship and can also lead to new forms of responsibility being imposed on parents for being “guilty” of sharing problematic “substance” with their offspring. Such considerations are complicated by the fact that a child's genetic variation is not necessarily something they inherited from their parents. This paper explores how questions of inheritance and responsibility are brought into play by pediatric genetics. It does so by drawing on ethnographic research of a genetics service in the UK. In particular we highlight how understandings of kinship can be unsettled by genetic scrutiny, but that once unsettled are not resolved by establishing whether a child has or has not inherited a genetic condition from their parents. Instead existing cultural kinship understandings of the moral substance of kinship responsibility towards producing and raising the right kinds of children are of equal (if not more) importance.