TY - JOUR

T1 - De novo kin

T2 - sharing data, shielding persons, and forging relatedness in precision medicine

AU - Vive, Laura E. Navne

AU - Svendsen, Mette N.

PY - 2022

Y1 - 2022

N2 - 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.

AB - 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.

KW - KINSHIP

KW - GENETICS

U2 - 10.1111/1467-9655.13817

DO - 10.1111/1467-9655.13817

M3 - Journal article

VL - 28

SP - 1159

EP - 1176

JO - Journal of the Royal Anthropological Institute

JF - Journal of the Royal Anthropological Institute

SN - 1359-0987

IS - 4

ER -