A. Right now, millions and millions of samples stored in tissue banks, in some guy’s basement lab, in hospitals, in a small town in Iowa—they’re all being used for research. You can’t go back and get permission for all this. So what are you going to do? Destroy them all? That would be horrific for science. And that would cause financial and all kinds of damage for research.
Q. If all the human tissue that’s used in research were destroyed, what wouldn’t we have?
A. Vaccines for measles, mumps, rubella, rabies, for sure. A lot of drugs. They’d start growing new cell lines, but some existing ones are particularly useful for this stuff. One line from an aborted fetus—and the mother certainly didn’t know the cells were taken—is used to grow a majority of our vaccines because it has particular properties. It’s inconceivable to think about what research studies would have to stop.
Q. Couldn’t we just grow more cell cultures with tissue from people who give consent?
A. Who knows how long it would take to find a valuable, important cell line like HeLa? There are tons of cells that will grow now, but not many of them are particularly valuable.
Q. Other issues of consent appear in the book. What happened to Elsie, Henrietta’s older daughter?
A. When she was 14 or 15, she was institutionalized when Henrietta’s fifth child was born, which was also the year Henrietta was diagnosed with cancer.
Q. So Henrietta’s doctors convinced her and her husband that the best thing to do was send Elsie to a mental institution in Crownsville, Md.
A. Yes, it was originally called the Hospital for the Negro Insane, for any black person with syphilis, epilepsy or a variety of conditions considered insane.
Q. What was wrong with Elsie?
A. It’s very hard to know because it was never discussed. Deborah always thought she was deaf because all the Lacks children have some level of hearing loss. Elsie was epileptic—she had seizures, and Henrietta could no longer handle her—and was born with syphilis. Her parents were first cousins so she also could have been born with mental problems. No one knows because no one ever communicated with her. Henrietta visited her once a week. Elsie would cry and cling to her.
Q. You and Deborah learned what happened there.
A. It was horrific. Patients were crammed together, children were mixed with adults, girls with boys. Children were used for research without their parents’ permission. This included doctors probing their brains during epileptic seizures to figure out what was going on. It was unthinkably painful and awful. We didn’t expect to learn this at all.
Q. How did Deborah react?
A. That moment when we discovered what was actually done to Elsie was so shocking and traumatic. Deborah knew something had happened to her sister, but no one had ever talked about it, just like no one ever talked about her mother.
Q. But at least in her mother’s case, she learned that no one hurt her mother.
A. Deborah suspected that doctors had given her mother cancer because they knew her body would create these valuable cells. She learned that wasn’t true. When I was helping her learn about the HeLa, she would say that if she had studied this stuff, it wouldn’t have been as traumatizing.
Q. And you had a lot of fun learning about Henrietta Lacks.
A. Deborah is so funny! And lively, and a beautiful character. During these years of research, there was all this sadness, but also moments that were just delightful, listening to the family stories.
Carol Kaufmann is a contributing editor at the AARP Bulletin.