Q. The Lacks family didn’t know anything about these cells for 25 years.
A. Yes, some scientists decided to track down Henrietta’s family because they thought research on her relatives would teach more about HeLa cells and Henrietta’s DNA. A postdoctoral researcher ended up calling Henrietta’s husband.
Q. And her English wasn’t very clear, right?
A. She had come to the U.S. recently from China, had a pretty thick accent and didn’t know that Mr. Lacks didn’t know about the cells. Mr. Lacks understood the phone call like this: “We’ve got your wife, she’s lying in a laboratory for the past 25 years and now we need to test your kids to see if they have cancer,” which wasn’t what she said at all. Neither understood what the other was saying. But Mr. Lacks called his kids and told them to give blood.
Q. The family was never compensated for anything—their blood, their mother’s prolific cells.
A. That became an enormous issue for the family. They didn’t pay that much attention to it until they read in an article that the HeLa cells were selling for a certain amount per vial and that really got them angry. Money had been a struggle for them their whole lives.
Q. In taking Henrietta’s cells, was an element of discrimination at work?
A. It’s hard to say. If Henrietta had been white and wealthy, would this have happened? Doctors were trying to figure out what cervical cancer was and were taking samples from pretty much anyone who came into Hopkins with cervical cancer. They weren’t just looking at black women.
Q. But Henrietta was also poor and uneducated.
A. Yes, those were the people who usually ended up in the public wards at Hopkins where the study was being done. This was a charity hospital, so you can’t take out the factors of race and class because a white woman with money probably wouldn’t have gone there in the first place. We just don’t know.
Q. Could doctors take cells from you or me today without our consent?
A. Absolutely. Doctors often keep tissues from patients who’ve had a mole removed or a tonsillectomy or any number of routine procedures; most Americans have their tissues on file somewhere. It’s been mandatory for any child born after the early ’60s to test for genetic disorders, and those samples are often kept and stored for future research.
Q. Are patients aware of this?
A. People are starting to find out what’s happening, and it’s becoming a big issue. In Texas, a group of parents sued because their children’s samples were stored and were being used for research. A few weeks ago, the court ordered those samples destroyed.
Q. Wouldn’t most people be glad to contribute to the collective body of scientific knowledge?
A. A lot of people think using their cells in culture is just great. One scientist I heard from posted a note on the Virology blog that said, “You’re kidding! These are cells that are totally disembodied from the person. How could anyone have a problem with this?”
But there are others who say, “That’s part of me and it has my DNA in it and you didn’t ask.” So there are legitimate concerns on both sides. When I talk to people who have lawsuits over cells, it often comes down to “if they had asked me, I would have been fine with it.”
Q. Deborah, Henrietta’s younger daughter, felt very tied to the HeLa cells.
A. She was traumatized by not having a mother. So much of this story is about her emotional attachment to the cells and her belief that this is part of her mother that is alive. Could she get to know her this way? Could she see her somehow?
Q. Couldn’t doctors ask for patients’ consent to take cell samples?
A. That’s been a very thorny issue for science since the late ’60s and early ’70s. For scientists, it’s a nightmare.