Feibel: "Who was Henrietta Lacks and what was her contribution to science?"
Skloot: "Henrietta Lacks was a poor African-American tobacco farmer who grew up in southern Virginia and at the age of 30 she was diagnosed with cervical cancer. And she went to the hospital at Johns Hopkins and without her knowledge, before treating her cancer, her doctor just took a little piece of her tumor and put it in a dish. And no one knows exactly why but her cells just never died. So they became the first immortal human cells ever grown in culture and they’re still alive today growing in laboratories around the world. And she died a few months later but her cells went on to become one of the most important things that happened to medicine."
Feibel: "These cells are now called HeLa cells, after Henrietta Lacks. But you also tell the story of the woman behind those cells and the stories of her family. Why did you decide to do that?"
Skloot: "I felt like it was important to tell her story because of that, to sort of show that there’s a human being behind all the biological samples. Her family to this day, they’re very poor, and they can’t afford health insurance and they often say you know ‘If our mother was so important to medicine, why can’t we go to the doctor?’ And ‘If people are buying and selling these things, essentially where’s our cut?’"
Feibel: "Speaking of the cut. So you write in the book that the HeLa cells were the first human tissue that was commercialized. And you also bring the story of the human tissue industry up to the present day."
Skloot: "There’s a large debate going on right now about who should profit off of research on biological materials, should we be able to patent genes, what effect should that have on science? And should people be told that their tissues are being used in research and potentially commercialized? So it’s a big issue that’s still sort of under heavy discussion."
Feibel: "So all of us may have tissue stored somewhere, from getting a mole removed or our appendix out of even just getting blood drawn. So are you saying that in most cases, those tissues can be freely used by scientists or even sold and a profit made from the discoveries?"
Skloot: "Yeah, as long as your identity is not attached to them and the researcher hasn’t had first hand contact with you, then it doesn’t require informed consent and there’s nothing saying that anyone has to disclose whether it’s potentially commercialized."
Feibel: "You point out in the book that that situation has led to a number of lawsuits. And more recently there’s a case in Texas that you’ve been tracking. Can you tell me more about that?"
Skloot: "Several families found out that fetal blood samples taken from their newborn children at the hospitals for general genetic testing — those samples are often stored and used in research and parents don’t usually realize it. And some parents in Texas found out about this and sued and it led to this settlement where the state of Texas, they ordered — I think it was about 6.3 million samples that had to be destroyed because they were being used in research without the parents realizing it."
Feibel: "So are you saying that we need more consent before taking tissue samples from people? I mean, what if people just start refusing and then what happens to all the research?"
Skloot: "One of the things I didn’t want to come from this book is to have people say 'Oh, tissue research is bad, we don’t want doctors doing this and scientists doing this.' We do."
"I’ve talked to people involved in lawsuits like this and they all, including the Lackses, they all say “If they had just asked us we would have said ‘yes.’” Where people get unhappy is when they hear after the fact and the damage that does to public trust in science is pretty enormous and it can have some really dangerous effects for science and also for the general public."
"You know, people who begin mistrusting their doctors don’t want to go to the doctor and they don’t want to donate tissues for research and science needs that. So it’s — if every state followed suit and did what happened in this Texas case, this would be really damaging for science."
That was Rebecca Skloot, author of “The Immortal Life of Henriettta Lacks.” She will be speaking tomorrow in Houston at a fundraiser for Texas Children’s Cancer Center.
From the KUHF Health Science and Technology Desk, I’m Carrie Feibel.