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The not-so-immortal life of tissue banks

After hearing Terry Gross of NPR's Fresh Air interview science journalist Rebecca Skloot on my commute home last night, I'm itching to read Skloot's new book, The Immortal Life of Henrietta Lacks. The book tells how a cervical cancer biopsy taken from Lacks in 1951 was turned into the first line of human cells that could be grown in a dish.

As the Fresh Air story explained, HeLa cells (so named for Mrs. Lacks) have enabled countless biomedical advances, including development of the Salk polio vaccine. But the cancer biopsy that gave rise to the HeLa cell line was used without Mrs. Lacks' knowledge or consent.

For me, the most interesting part of Skloot's interview was her discussion of the ethics of using human cells for research. Most Americans have cells stored somewhere that scientists can access, she pointed out. For instance, nearly all people born in the U.S. in the 1960s or later had small blood samples taken at birth to test for genetic diseases. In many cases, the leftover blood samples were stored in case a research team wanted to use them, Skloot told Gross, though no one is sure how often the samples get used and how often they just sit around:

It's just, this is something that's been sort of building for a long time, and it's only recently scientists are starting to sort of say wow, you know, these fetal blood samples are this incredibly valuable resource. We should create these banks and sort of start maybe being a little more organized about it.

But over Christmas, a court in Texas ruled in favor of some families who sued because their children's neonatal blood samples were being used for research without their consent, Skloot said. The outcome was that the state of Texas had to destroy more than 5.3 million stored blood samples.

And that is huge. That's never happened before. No court has ruled in favor of the tissue, you know, quote-unquote, donors in any case like this, and having the result be we're going to destroy all this stuff very sort of quietly.

Skloot is worried that similar rulings in other states could preempt a "larger discussion of what to do with the samples and how to do this in a way that isn't going to hurt science but will also protect the people."

As I listened, I couldn't help but think about a Stanford study now underway to examine the causes of a debilitating lung disease that strikes 15,000 premature babies a year. The research, described here, relies on a large database of infant blood samples maintained by the California Department of Public Health.

According to lead researcher Hugh O'Brodovich, MD, "The power of this database is that we can sample from the whole state of California. It gives us a population-based study - that's a very powerful approach that avoids unintended bias" in patient selection.

In short, if large banks of patient tissues are quietly destroyed, we'll lose a valuable opportunity to study the health of entire human populations.

Photo of HeLa cells by GE Healthcare.

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