Paper short abstract:

Does the new genetics reduce identity to biology? I show how genetic medicine shifts between essentialising biology and cultural repertoires that refigure persons as more than the sum of biological parts. As it reduces bodies to bio-objects, gene medicine rescues people from such a reduction.

Paper long abstract:

Currently, there is fierce debate over whether genetic medicine is reducing the identity of persons to the effect of their (increasingly complex) biology. In the paper that follows I show how there would be no point in a gene medicine that was only concerned with persons as biologically determined: gene medicine would have no power if it did not also reaffirm the human as of a higher order than mere substance. I show how genetic medicine, in all its hybridity, reperforms the clinic as at the 'pinnacle' of the human, not the biological, or newly fashioned, 'life' sciences (Foucault 1976). My argument is grounded in an ethnography of dysmorphology, an emergent field of genetic medicine concerned with the study of abnormal forms and the identification of 'syndromes'. The subjects of dysmorphology are mainly babies and children, and their families. The study tracked dysmorphology through its emergence as a relatively young specialism and through all aspects of the processes and practices that go to make it up as a distinctive clinical field. Dysmorphology process distinguishes the normal from the abnormal and the genetic from the non-genetic by drawing classic medical processes of diagnosis, discourses of child development together with methods of genetic profiling, including the use of molecular tests. Critically, dysmorphology conflates appearance and essence one moment, and then separates it the next. In the paper, I draw upon Marilyn Strathern's understandings of how persons emerge as an effect of relations between parts and wholes, to show how dysmorphology's subjects are produced as both distinctive, and individual, as well 'part of a family line' or as 'of a kind'. In particular, I show how genetic medicine shifts people between processes of objectification that essentialise their biology to include them in a category that figures them as 'of a kind', or as a part of a family line; and cultural repertoires that refigure them as individual and distinctive, made up of much more than their biological parts. One moment, then, clinical practices constitute the individual body as a part of, or as different from, the body of the family. Here the body of an individual or of a family is performed as a phenotype and as the appearance, or 'expression' of a genotype. Within this perspective genotypes emerge as ' wholes' that are made up of parts coming from different combinations of genes, including genetic accidents. The next moment cultural repertoires are brought into play that refigure people as much more than the sum of their embodied, including inherited, parts. That is, at the very moment it reduces the body to an object, gene medicine rescues the genetically aberrant from the totalising effect of such a reduction. It is this humanism that helps provide temporary and precarious shelter from stigma for parents and children affected by genetic disorders, as well as helps revive medical dominance.