Bioscience

Web genomics exposes ethics gaps

June 24, 2010

By Flinn Foundation

[Source: The Scientist] – With contributions from 9,000 web-savvy customers, the personal genetics company 23andMe has linked a suite of genes to eight rather playful traits, such as the ability to smell post-asparagus pee or the tendency to sneeze in sunlight. But in getting the results published today (June 24) in PLoS Genetics, they unintentionally illuminated an ungoverned landscape of human genetics research.  The study wasn’t previewed by a human research ethics committee, but neither the company nor publishers acted illegally. Participants signed a consent form to have their DNA sequenced for $399 (now $499), agreeing that their genetic information could be used for research by 23andMe. And simple questionnaires that customers, including lead author Nicholas Eriksson, completed on the company’s website were voluntary. “It’s actually just fun and addictive to take these surveys,” said Eriksson, a statistical geneticist at 23andMe in Mountain View, California.

From surveys, the 23andMe team garnered information about 22 entertaining and heritable traits like curly hair, optimism, and freckles. They discovered new associations between four traits and specific single nucleotide polymorphisms (SNPs). People who sneeze as they step into the sunlight, for example, likely carry two specific SNPs underlying the behavior. And SNPs located near genes for smelling suggest that participants who said they never experienced stinky post-asparagus pee don’t smell the stench. Traits like eye color linked to SNPs identified in previous studies, assuring the team that their web-based survey approach was reliable.

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