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.
Timothy writes, “Diego Gómez is a Colombian conservation biologist. When he was a college student, he shared a single research paper online so that others could read and learn from it, just as he did. Diego was criminally prosecuted for copyright infringement, and faced up to 8 years in prison.”
Sometimes, in the course of his work, University of Florida molecular geneticist Martin Cohn must travel with unusual items like a 3D-printed mouse penis. Similarly, University of Massachusetts biologist Diane Kelly totes around anatomical models like a mold of a dolphin vagina. They’re not alone in the odd science-related items they must fly with, from […]
Rod McCullom at Undark has a terrific overview of the perpetual “virtual lineup,” where half of all American adults “are enrolled in unregulated facial recognition networks used by state and local law enforcement agencies.”
Boasting an IPX6 waterproof rating, the Trakk Bullet Ultra Compact Waterproof Bluetooth Speaker resists dust and heavy rainfall. It’s currently available in the Boing Boing Store.The Trakk Bullet offers the same wireless convenience as other portable speakers, but few are built as tough as this one. Its utilitarian construction is designed to be a totally low-maintenance […]
The Ticwatch 2 Active Smartwatch is a simpler take on an active wearable that raised over $2m dollars on Kickstarter and is currently offered in the Boing Boing Store.Somewhere in between the single-day battery life and platform-specificity of the Apple Watch and Android Wear devices, there exists the Ticwatch. Instead of trying to shoehorn another […]
Loot Crate is a subscription service that delivers a box of curated pop culture goods to your doorstep. To sample their geeky wares, you can order a single mystery box exclusively from the Boing Boing Store.Each month Loot Crate sends you 6-7 unique items and apparel, including collectibles, books, and t-shirts. Pulling inspiration from all […]