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Science and technology studies, Sociology
The Life of Genetic Data
I am discussing and exploring the life of genetic data by enquiring into how genetic data is lived, and I do this by studying a number of data practices. In particularly, I am focusing on the North American company 23andMe Inc., which is one of the largest and best-known personal genomics companies. My research is a study of four data practices. These are data as numbers in relation to the risk profiles that are part of 23andMe's Personal Genome Service, data as as brand (23andMe), research data in relation to 23andMe's Parkinson's Disease Genetics Inititative, and the fourth is data in terms of individuals' exploration and analysis of 23andMe's calls "raw data". The aim is to explore the life of genetic data, that is, how genetic technologies, genetic science and individual bodies interfere in practice.
Overall, in my project, I am exploring how we can think differently about genetic data - different to genetic data as a matter of quality and standards, and genetic data as empowerment and responsibility. Drawing on literature within Science and Technology Studies, I suggest we think about data as 'doing something' and not as a 'knowledge product'. As such, I am focusing on the four data practices to give an account of the life of genetic data and in turn to challenge the notion of people as being merely consumers of genetic tests.
This research is supported by Intel Labs as part of the "Biosensors in Everyday Life" program.
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