This paper reports on the genetics clinic and examines the wider functions it
provides for parents who have a child with learning disabilities that may be
associated with an underlying genetic cause. It derives from an ethnographic
study of one clinical genetics team within a UK clinical genetics service and
their clinical caseload, specifically their cases of genetic syndromes associated
with dysmorphology, a speciality within clinical genetics. Dysmorphology is
the medical study of abnormal forms in the human and is concerned with the
identification and classification of a variety of congenital malformations. Our
analysis of the clinical consultations and subsequent interviews with parents
indicate that obtaining a genetic diagnosis and classification of their child’s
problems was not the sole function of these consultations. In addition, the
clinic provides parents with moral absolution from having ‘caused’ their
child’s problems and is an important site for the sentimental and celebratory
focus on the child. Thus, the role of the clinical genetics service is not merely
to assemble a diagnosis from the available information and to provide a
source of expert opinion on the causes of the condition, but to provide
reassurance to parents who might otherwise blame themselves (or be blamed
by others) for their child’s condition. An important aspect of these
consultations was the sentimental work of repairing the child, providing a
sphere in which the development and behaviour of the child is discussed in
favourable terms, and given assurances of ‘normal’ parenting and family life,
often in marked contrast to their experience in the wider public world. Thus,
the work of establishing diagnostic categories also allows important moral
and sentimental work to be accomplished within the clinic