Taking the Least of You

The Tissue-Industrial Complex

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Readers’ Opinions Forum: Bioethics

Who should own the blood and tissue samples you give?

Anna O'Connell couldn't find Ted. She stood bent at the waist on a frigid afternoon last December, her head and all its fuzzy red hair crammed into an old stand-up freezer that looked like something you get milk from at the corner store: tall, white with a bit of rust and a pull handle. That freezer is the first thing you see when you walk into the Fox Chase Cancer Center laboratory in Philadelphia, where O'Connell has spent decades as a staff scientist. She pushed aside vial after vial. "I know we still have him somewhere," she yelled, her head still inside the freezer. "We've got serum from, like, 450,000 people."

O'Connell grabbed a ragged cardboard box the size of a paperback book. "This is my treasure box," she said. "I bet Ted's in here." The box held 56 tiny glass vials filled with clear blood serum - some from patients, others from laboratory animals, all taken and kept for hepatitis research. Around each vial, on a thin piece of tape, someone had scribbled information about each sample. "That's duck," O'Connell said, raising a vial to eye level. She dropped it and grabbed the next one. "Woodchuck." She shook her head. "Geez, somebody should organize this." She lifted vials one at a time, reading labels, dropping them back into the box and muttering, "Duck. . .duck. . .human, not Ted. . .duck. . .woodchuck. . .human, not Ted.. . ."

She looked over her shoulder at me and smiled apologetically. I had traveled many miles to learn about this man, Ted, whose blood was key in the creation of the first-ever hepatitis B vaccine decades earlier. "It's strange," O'Connell said, shaking her head. "I used him so much over the years, I usually keep a little bit of him in every freezer."

Suddenly, she twirled to face me, arm extended, holding one tiny vial, grinning. "Here he is!" she said. "Ted Slavin."

Though he died 21 years ago, Slavin is worth keeping track of. Not because his cells produced extremely valuable proteins that were important for scientific research. But because Slavin's relationship to those cells was unique: they weren't just part of his body; they were his business, his property. Slavin was one of the first people in history to decide that contrary to the way things usually work in science, he would maintain complete control over any blood and tissues removed from his body. He would determine who used them for research, how and, most important to Slavin, who made money from them.

This may not sound like a particularly groundbreaking idea, unless you consider it with a little-known fact: blood samples and other excised human tissues have an afterlife. When you go to the doctor for a routine blood test or mole removal, when you have an appendectomy, tonsillectomy or any other kind of ectomy, the stuff you leave behind doesn't always get thrown out. Doctors, hospitals and laboratories keep them. Often indefinitely. Some get consent with admission forms that say something like, I give my doctor permission to dispose of my tissues or use them in research. Others don't.

Today most Americans have their tissue on file somewhere. In 1999 the RAND Corporation published a report (the first and, so far, the last of its kind) with what it called a "conservative estimate" that more than 307 million tissue samples from more than 178 million people were stored in the United States. This number, the report said, was increasing by more than 20 million samples each year. These samples come from routine medical 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 F.B.I. and the National Institutes of Health. They're in biotech companies and most hospitals. Biobanks store everything from appendixes, ovaries and skin to sphincters, testicles and fat. Not to mention blood samples taken from most children born in the United States since the late 60's, when states started mandating screening newborns for genetic diseases.

Scientists and surgeons use these tissues 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 responses. They remove DNA to examine it - and therefore the person it came from - gene by gene. Without those tissues, we would have no tests for diseases like hepatitis and H.I.V.; no vaccines for polio, smallpox, measles; none of the new promising drugs for leukemia, breast cancer, colon cancer. And without tissue samples, the developers of those products would be out billions of dollars.

How you should feel about all this isn't obvious. Scientists aren't stealing your arm or some vital organ. They're just using tissue scraps you parted with voluntarily. But still, someone is taking part of you. And people often have a strong sense of ownership when it comes to their bodies. Even tiny scraps of it. Especially when they hear that someone else might be making money off those scraps. Or using them to uncover potentially damaging information about their genes and medical histories.

But a feeling of ownership doesn't hold up in court. And at this point, the law isn't clear on whether you have the right to own and control your tissues. When they're part of your body, they're clearly yours. Once they're excised, things get murky.

The scale of tissue research is only getting bigger. "It used to be, some researcher in Florida had 60 samples in his freezer, then another guy in Utah had some in his," says Kathy Hudson, a molecular biologist who directs the Genetics and Public Policy Center at Johns Hopkins University. "Now we're talking about a massive, massive scale." Within the last year, 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 N.I.H. to track disease genes.

Many scientists depend on access to tissues without the burden of restrictions that donors might make. (Restrictions like, You can use my tissues for this research, not that research; don't commercialize them, or do, and give me a cut.) At this point, scientists largely have the access they want. And they hope to keep it that way for fear that restrictions might slow research. But a growing number of activists - ethicists, lawyers, doctors and patients - are arguing cases and pushing for federal regulations that would change the status quo by granting people rights to control their tissues. These days, their attention is focused on a potentially landmark court case: Washington University is claiming ownership of tissues from 6,000 patients who want their samples removed from the university's prostate-cancer bank. Hudson, who has conducted focus groups about the public's feelings on the tissue issue, says she believes that tissue rights have the potential to become a bona fide movement. "I could see a broader mobilization where people start saying, 'No, you can't take my tissues,"' she told me. "All I can say is, we better deal with the problems now instead of waiting until that happens."

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Rebecca Skloot is the author of "The Immortal Life of Henrietta Lacks," about the history, ethics and ownership of the first human cell line, which will be published by Crown next year.

Editors' Note

An article on Page 38 of The Times Magazine today about human tissue includes an outdated reference to a lawsuit between Washington University and Dr. William J. Catalona over ownership of samples that he collected while employed there. On Friday, after the magazine had gone to press, the presiding judge ruled that the university "owns all biological materials, including but not limited to blood, tissue and DNA samples" that it stores.