New York Times: A Lasting Gift to Medicine That Wasn’t Really a Gift
The New York Times has a fascinating story that raises questions about the privacy of a person’s medical data and what rights a person has to their own tissue:
The story began in January 1951, when Mrs. Lacks was found to have cervical cancer. She was treated with radium at Johns Hopkins, the standard of care in that day, but there was no stopping the cancer. Her doctor had never seen anything like it. Within months, her body was full of tumors, and she died in excruciating pain that October. [...]
Neither Mrs. Lacks nor any of her relatives knew that doctors had given a sample of her tumor to Dr. George Gey [...]
A cell line called HeLa (for Henrietta Lacks) was born. Those immortal cells soon became the workhorse of laboratories everywhere. HeLa cells were used to develop the first polio vaccine, they were launched into space for experiments in zero gravity and they helped produce drugs for numerous diseases, including Parkinson’s, leukemia and the flu. By now, literally tons of them have been produced.
Dr. Gey did not make money from the cells, but they were commercialized. Now they are bought and sold every day the world over, and they have generated millions in profits.
The Lacks family never got a dime. [...]
When they learned that their mother’s cells had saved lives, the family felt proud. But they also felt confused, a bit frightened, used and abused. It had never occurred to anyone to ask permission to take their mother’s tissue, tell them that her cells had changed scientific history or even to say thank you. And certainly no one had ever suggested that they deserved a share of the profits.
Some of the Lackses later gave blood to Hopkins researchers, thinking they were being tested for cancer, when really the scientists wanted their genetic information to help determine whether HeLa cells were contaminating other cultures. [...]
Ideas about informed consent have changed in the last 60 years, and the forms now given to people having surgery or biopsies usually spell out that tissue removed from them may be used for research. But [journalist Rebecca] Skloot points out that patients today don’t really have any more control over removed body parts than Mrs. Lacks did. Most people just obediently sign the forms.
Which is as it should be, many scientists say, arguing that Mrs. Lacks’s immortal cells were an accident of biology, not something she created or invented, and were used to benefit countless others. Most of what is removed from people is of no value anyway, and researchers say it would be too complicated and would hinder progress if ownership of such things were assigned to patients and royalties had to be paid.
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