Last week, scientists announced they had sequenced the full genome of the most widely used human cell line in biology, the "HeLa" cells, and published the results on the web. But the descendents of the woman from whom the cells originated were never consulted before the genetic information was made public, and thus never gave their consent to its release.
Morning Edition's Renee Montagne spoke to Rebecca Skloot, author of the best-selling book The Immortal Life of Henrietta Lacks, which chronicles the cells and the family tied to them. Skloot also wrote an op-ed in Sunday's New York Times about the need for international standards to protect the privacy of genetic data.
Henrietta Lacks was a poor black tobacco farmer in southern Virginia. In 1951, she was diagnosed with cervical cancer. Her doctor, without telling her, took a little piece of her tumor to study it.
Lacks died soon afterward, but her cells kept growing and reproducing in the doctor's Johns Hopkins lab. As scientists recognized their surprising ability to grow indefinitely, the cells become hugely important to medical research. For the past 60 years, the HeLa cells have been used in experiments on topics as diverse as cloning, the effects of radiation, and the polio vaccine.
Lacks' family didn't find out about the immortal cells until the 1970s.
"It has been a long legacy within the family of 'research without consent,' and they've [experienced] quite a few privacy violations along the way," says Skloot.
Some of the HeLa genome has been available for years. The European researchers who sequenced the full genome initially claimed last week that no private medical information about Lacks or her descendents could come from the data they published online.
But right away other researchers began to refute that. They noted that although the cells have mutated, they still contain Henrietta's genes.
"To prove that point, some scientists took that genome and turned it into a [detailed] report on Henrietta and what her genes actually said, to illustrate, 'Yes, you can find very specific information about her,' " says Skloot.
For example, anyone looking at the genome could learn about Lacks' risk factors for some diseases like Alzheimer's, and also could learn about some non-disease traits like the color of her hair or eyes.
It's perfectly legal to publish someone else's genome online, but it does raise significant questions about privacy. Though Henrietta Lacks is no longer alive, releasing reports about her genetic information also invariably releases some information about the DNA of her descendents.
"We have more questions [about privacy] than answers at this point," says Skloot. "One of the questions that comes up is, 'Can you hide the parts of this genome that are Henrietta?' The answer seems to be no."
It's even relatively easy to identify people whose DNA has been posted anonymously, as researchers noted in the journal Science in January.
And right now, there are no regulations to protect families like the Lackses.
"Our regulations aren't covering the privacy questions that come up for people," says Skloot.
Skloot has been in touch with the Lacks family. She says they were shocked. Initially, they wanted the genome taken down from the Internet until they could review and understand what it meant and might reveal about them. (As Skloot reported in the Times, the European researchers have apologized and quietly removed the data from the web.)
But the family also wanted to know how the information in the genome could help society.
"They don't want to stop science," says Skloot. "They don't want people to stop doing research on HeLa. So they said, 'Take it offline. And then we want to sit down and learn about this stuff so that we can decide whether we want to give consent.' "