Opinion: Get to Know Why People Openly Share Genomic Data

It’s not only about health but also about exploring ancestry and contributing to science.

Written byTobias Haeusermann
| 3 min read

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ISTOCK, MA_RISHIn 2007, 54 years after his ground-breaking co-discovery of the structure of DNA, Nobel laureate James Watson was the first individual to have his genome sequenced for less than $1 million. Whereas the Human Genome Project amounted to $3 billion over a period of 13 years, and Watson's genome took two months to be sequenced, costs have dropped significantly since then, with sequencing pioneer Craig Venter, among others, setting his sights on the $100 genome that can be sequenced in under an hour.

In the meantime, new markets beckoned, and another source of human genetic data emerged from direct-to-consumer genetic testing (DTC-GT). Following a sharp decrease in costs for analyzing genetic information, companies such as 23andMe, FamilyTreeDNA, and Ancestry.com now provide customers access to their genetic data for a comparatively affordable fee and the industry keeps growing (see dnatestingchoice.com for the most commonly used DNA testing providers to date).

Yet with popularity comes scrutiny: who will benefit from the privatization of genetic data? Rather than allowing for companies to hoard the spoils of DTC-GT, some scientists and consumers have taken matters into their own hands, encapsulated in the platform openSNP (https://opensnp.org/). Initiated in 2011, it essentially involves volunteers sharing their genomic, health, and trait data publicly and encourages ...

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