Paper short abstract:

This paper follows the extraction, reproduction, and use of biological samples for research in Huntington's disease (HD). Because HD is inherited, and many researchers are from HD families, this process is a constant (re)negotiation and (re)definition of biological and social kinship relations.

Paper long abstract:

Huntington’s disease (HD) is a rare, hereditary neurodegenerative disease, caused by a mutation to the huntingtin gene which produces a mutant huntingtin protein. HD has neither targeted treatment nor cure, but there is a significant amount of clinical research being undertaken, which largely relies on samples of the mutant huntingtin protein.

HD Clarity is longitudinal study of Huntington’s disease, designed to ‘facilitate therapeutic developments for Huntington’s disease’ (HD) through creating a repository of cerebrospinal fluid (CSF) and plasma from HD patients and healthy controls, which are provided to researchers upon request. Significantly, many HD researchers are themselves HD-positive, or members of HD families; some researchers have themselves donated biosamples to HD Clarity.

But this repository is a finite resource, as ‘using’ a CSF or plasma sample in the lab effectively destroys it. One HD lab has addressed this issue by reproducing the samples through cell cultures, and distributing these reproduced samples to other labs, in order to ‘make the most of each sample’. This is posited by the lab as a moral imperative to value not just the genetic material itself, but the embodied and affective labour of the donors (who may be family or friends, albeit anonymously).

Based on laboratory ethnography, this paper follows biosamples from extraction from patients, to storage in the repository, to reproduction through cell cultures, and eventually to the laboratory bench. As the biosamples are imbued with affective meaning for researchers, this process is a constant (re)negotiation and (re)definition of biological and social kinship relations.