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Accepted Paper

Distributed Expertise and Norm Production in Online Genetic Genealogy Communities  
Joa Hiitola (Tampere University) Valtteri Vähä-Savo (Tampere University)

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Paper short abstract

This paper examines online genetic genealogy communities as sites of distributed expertise and citizen science, analyzing how 'search angels' and lay networks actively reshape genetic knowledge and renegotiate kinship outside institutional frameworks.

Paper long abstract

Direct-to-consumer DNA testing has prompted adoptees, donor-conceived individuals, and people discovering misattributed parentage to turn to unofficial online genetic genealogy communities (GGCs) for support and expertise. Despite massive public interest in DNA testing, these community networks remain understudied. In our proposal we discuss a multidisciplinary project plan which examines how GGCs function as sites of distributed expertise, knowledge production, and norm-making operating outside official institutional frameworks. Central to our analysis are "search angels" - volunteers who have developed sophisticated methods for interpreting DNA data and reconstructing biological lineages - whose practices we examine as a form of grassroots citizen science. Drawing on biosocial frameworks and the concept of kinning, we analyze how biological materials, technological platforms, and social practices become entangled in processes of relatedness-making. Using digital ethnography across international Facebook communities, complemented by interviews with search angels and active members, we investigate three interconnected questions: how alternative approaches to sharing and interpreting genetic information emerge and stabilise; how kinship relationships are renegotiated through collective sense-making, ethical discussion, and norm production; and how shared practices generate new forms of connection and belonging. We wish to make four contributions: establish GGCs as a distinct form of citizen science; advance postgenomic scholarship by documenting grassroots bioethical labor; redefine epistemic authority by showing how lay networks actively reshape, rather than merely consume, genetic knowledge.

Traditional Open Panel P140
Uncertain presents and alternative futures in direct-to-consumer genetic testing
  Session 1