The Immortal Life of Henrietta Lacks

in 2009, when this book went to press.
Today most Americans have their tissue on file somewhere. When you go to the doctor for
a routine blood test or to have a mole removed, when you have an appendectomy, tonsillec-
tomy, or any other kind of ectomy, the stuff you leave behind doesn’t always get thrown out.
Doctors, hospitals, and laboratories keep it. Often indefinitely.
In 1999 the RAND Corporation published a report (the first and, so far, last of its kind) with
a “conservative estimate” that more than 307 million tissue samples from more than 178 mil-
lion people were stored in the United States alone. This number, the report said, was increas-
ing by more than 20 million samples each year. The samples come from routine medical pro-
cedures, tests, operations, clinical trials, and research donations. They sit in lab freezers, on
shelves, or in industrial vats of liquid nitrogen. They’re stored at military facilities, the FBI, and
the National Institutes of Health. They’re in biotech company labs and most hospitals.
Biobanks store appendixes, ovaries, skin, sphincters, testicles, fat, even foreskins from most
circumcisions. They also house blood samples taken from most infants born in the United
States since the late sixties, when states started mandating the screening of all newborns for
genetic diseases.
And the scale of tissue research is only getting bigger. “It used to be, some researcher in
Florida had sixty samples in his freezer, then another guy in Utah had some in his,” says
Kathy Hudson, a molecular biologist who founded the Genetics and Public Policy Center at
Johns Hopkins University and is now chief of staff at NIH. “Now we’re talking about a
massive, massive scale.” In 2009 the NIH invested $13.5 million to develop a bank for the
samples taken from new borns nationwide. A few years ago the National Cancer Institute
started gathering what it expects will be millions of tissue samples for mapping cancer genes;
the Genographic Project began doing the same to map human migration patterns, as did the
NIH to track disease genes. And for several years the public has been sending samples by
the millions to personalized DNA testing companies like 23andMe, which only provide cus-
tomers with their personal medical or genealogical information if they first sign a form granting
permission for their samples to be stored for future research.
Scientists use these samples to develop everything from flu vaccines to penis-
enlargement products. They put cells in culture dishes and expose them to radiation, drugs,
cosmetics, viruses, household chemicals, and biological weapons, and then study their re-
sponses. Without those tissues, we would have no tests for diseases like hepatitis and HIV;
no vaccines for rabies, smallpox, measles; none of the promising new drugs for leukemia,
breast cancer, colon cancer. And developers of the products that rely on human biological
materials would be out billions of dollars.