A big win for consent, privacy, and genome data

The family of Henrietta Lacks — a woman whose cervical cancer cells were harvested and used in scientific research for decades without her knowledge or consent — will now play a role in deciding who has access to the Lacks' cell genome data, and for what purposes. There are loopholes in the new system. For instance, the agreement only applies to scientists who receive National Institutes of Health funding. And the genome of the cells has been sequenced so many times, at this point, that anybody who wasn't NIH funded and didn't want to voluntarily abide by the agreement essentially wouldn't have to.

But it is a big step forward, both for the Lacks family (whose own genetic information is contained in those genome sequences) and for the idea that human genetic information belongs to the people it comes from — not to whoever happens to sequence it.

The happy selfie posted here features NIH director Francis Collins posing with some of Henrietta Lacks' descendants after the agreement was announced. Read the rest

Open-source human genomes

Yesterday, during a World Science Festival panel on human origins and why our species outlasted other species of Homo, geneticist Ed Green mentioned that there were thousands of sequenced human genomes, from all over the world, that had been made publicly available. Our code is open source.

But where do you go to find it? Several folks on Twitter had great suggestions and I wanted to share them here.

The 1000 Genomes Project—organized by researchers at the Wellcome Trust, the National Institutes of Health, and Harvard—is working on sequencing the genomes of 2500 individuals. The data they've already collected is available online. Read a Nature article about The 1000 Genomes Project: Data management and community access.

The Personal Genome Project is interactive. Created by a researcher at Harvard Medical School, the program is aimed at enrolling 100,000 well-informed volunteers who will have their genomes sequenced and linked to anonymized medical data. Everything that's collected will be Creative Commons licensed for public use.

The University of California Santa Cruz Genome Browser is a great place to find publicly available genomes and sequences.

Thanks to Eva Rose, Aatish Bhatia, and Edward Banatt.

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