De novo kin: sharing data, shielding persons, and forging relatedness in precision medicine
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De novo kin : sharing data, shielding persons, and forging relatedness in precision medicine. / Vive, Laura E. Navne; Svendsen, Mette N.
In: Journal of the Royal Anthropological Institute, Vol. 28, No. 4, 2022, p. 1159-1176.Research output: Contribution to journal › Journal article › Research › peer-review
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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 -
ID: 319174339