Your Body Parts Are Ripe For Gene Hacking ⚙ Co.Labs ⚙ code + community

Came across this story Concerning the HeLa genome a few months back. Curious about who Henrietta Lacks was I did a bit more digging. Who would have thought that a bio-ethic quagmire would be an interesting story,,,

HeLa, short for Henrietta Lacks, is the reason bioethics is in the news today: the canonical example of the problem with non-consent. It’s the codename for the cancerous cell line taken, without permission, from an African-American tobacco farmer and mother of five in 1951. The stolen cells were unique: They copied themselves in petri dishes, which no human cancer cells ever had before. HeLa cells have since been involved in 74,000 studies, helping to develop cancer medicines and many other treatments. But Henrietta never gave her cells for research: They were taken from her, at a time before doctors had a concept of medical consent. Far from being anonymized, the abbreviation for her name became synonymous with research on cancer cells within the scientific community.

Rebecca Skloot, author of the best-selling book The Immortal Life of Henrietta Lacks that chronicles this story, says that in the intervening years, little has changed.

“Right now, many if not most [patients whose tissue is used for research] aren't giving consent, because they aren't being told that their tissue is being used in research, because they're considered anonymous samples," says Skloot. "All this material is still daily being collected from people without their knowledge: Scientists are very clearly saying 'we can identify you from that [DNA]'... If you tell people, 'we want to collect these samples to use in research,' most people will say yes. The problem comes when they find out after the fact.”

Shockingly, the scientific community made that mistake again with the Lacks family, 60 years after the initial transgression. In March, the genome of the popular HeLa cell line was sequenced and published by a lab in Germany. This prompted an uproar from journalists, geneticists, and bioethicists who were outraged that the Lacks family had again not been asked for permission. The data was retracted within days, and no more was seen of the HeLa genome until Nature republished it last Wednesday, along with an agreement between the Lacks family and Francis Collins, director of the National Institutes of Health (NIH).

Your Body Parts Are Ripe For Gene Hacking ⚙ Co.Labs ⚙ code + community

See also:

'Henrietta Lacks': A Donor's Immortal Legacy

Short Science: New Era of HeLa Research

Henrietta's Tumor