For Henrietta Lacks, immortality comes in a test tube
Nearly 60 years ago, a beautiful African-American woman died of aggressive cervical cancer at Johns Hopkins Hospital in Baltimore.
Her name was Henrietta Lacks, and she was just 31. She left behind five children. She also left behind some of her cancer cells, which were taken to a Johns Hopkins laboratory run by George Gey, who had grown up in Pittsburgh.
Dr. Gey had been on a 30-year quest to grow human cancer cells in the lab to promote research into curing malignancies, but no matter how he tried to improve their care and feeding, the cells always seemed to die out quickly.
Not Mrs. Lacks' cells, though.
Dubbed HeLa, for the first two letters of her names, these cancer cells grew, and grew, and grew, becoming the world's most successful and widely used cancer cell line.
The story of those cells and of the Lacks family, many of whom never had steady health insurance despite their mother's contribution to science, is told in a new book, "The Immortal Life of Henrietta Lacks," by Rebecca Skloot, a graduate of the University of Pittsburgh's master's program in nonfiction writing
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Ruth Faden, executive director of the Johns Hopkins Berman Institute of Bioethics, said most hospitals now ask consent from patients before they donate tissue or have it surgically removed.
The forms used at UPMC are one typical approach. They ask patients to acknowledge that their tissue may be used for medical research, and that they will be asked to authorize that research only if "my identity is linked to the specimens/tissue."
Other hospitals are much more detailed, she said, and ask patients to designate on a checklist which kinds of research their tissue can be used for.
But no one has adopted a standard approach for what happens if a patient's tissues or cells lead to a commercially successful product, Dr. Faden said.
Some scientists believe that paying people for tissue donations will inhibit scientific research, and that donations should be seen as an altruistic gift.
But others believe that only allows doctors, drug companies and others to reap all the profits that come from new biomedical products, and that the people who provided the original tissue should share in that wealth.
Today, she said, "there is no consensus on whether I as a patient am owed some control over the sample in terms of its distribution or compensation from any money earned from the sample."
A lot of people are working on solutions to that problem, she said.
One intriguing possibility is that in return for people freely donating their tissue, America would have a health care system that guaranteed everyone access to the drugs and treatments that are developed from those specimens, she said.
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