De novo kin: sharing data, shielding persons, and forging relatedness in precision medicine

Abstract

Comparing, sharing, and shielding children's biological and biographical data in genetic databases and on Facebook are central moves when geneticists and families search for diagnoses for children with rare diseases. Based on ethnographic fieldwork in Denmark, we show that the work of linking children carrying the same genetic mutations forges new sibling-like forms of relatedness between them. With the concept of 'datasociality', we add new layers to 'biosociality' by capturing the ways in which biological information is increasingly mediated by digital and algorithmic processes in the genomic era. In the process of both sharing data and securing anonymity, unrelated children become related through qualities of otherness.This article investigates issues of anonymity and relatedness which are brought to the fore in the use of international genetic databases when diagnosing children with rare diseases. The ethnographic material is drawn from Denmark, but speaks to much broader empirical discussions of the management of transnational health data and to anthropological theories of kinship. The starting point of this article is the ethnographic puzzle that for doctors to diagnose a child with a rare genetic disease, they need to compare one child's data with the data of multiple other children, while respecting each child's right to remain anonymous. In the process, the sharing of data in genetic databases and on Facebook comes to form recognition and affinity between the children.Sitting in on genetic counselling sessions of children with rare genetic diseases in a Danish clinic in 2018, we learned that to connect and track family disease histories and inheritance through generations, a genetic test and a family tree were not enough to facilitate a diagnosis. For the children featured in this article, disease does not run in the family. Instead they carry de novo disease-causing genetic mutations, which appear for the first time in the history of their families and are not inherited from

Ethical Endeavours

“…on the social benefi ts of grandparenting in Ireland, see Miller and Garvey 2022; on adults' attempts to 'normalise' young anti-capitalists in Spain, see Ballesté 2022) or new forms of kinship generated through 'datasociality' (e.g. on the forging of relatedness between children with rare diseases in precision medicine, see Navne and Svendsen 2022). Contributing to the ever-growing literature on care, authors analysed the complex interplay of support and control, love and hate in personal relationships as well as changes in ways of relating imposed or enabled by digital technologies (see Navne and Svendsen 2022; on online retail platforms in China, see Rippa 2022).…”