Think of the last time you went to the doctor–say, to have a routine blood test, or a mole removed. Do you ever wonder what happens to the extra stuff hacked off your body?

Sometimes, the hospital burns it. But other times, the tissue is kept and sent to labs for research. Using your body parts in this way is legal: As long as your name is stripped off the test tube, it’s considered an anonymous sample. But advances in genetics and new computer technologies are making this practice less anonymous than it once was, calling into question what doctors should be allowed to do with the pieces of you they take without asking permission. Or if they do, how your privacy can be protected.

The Genome That Started A Bioethics Tangle

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 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, 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).