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What Empowered Patients Need to Know about Blood, Organ and Tissue Specimens

Questions Raised by The Immortal Life of Henrietta Lacks

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Updated March 03, 2011

One of the questions raised by the book The Immortal Life of Henrietta Lacks (Rebecca Skloot), is the question of who owns the many body parts, organs, biopsies, blood and other tissue samples that are removed from us for testing or treatment purposes.

Legal questions about ownership have been tested in the courts. So far, individuals who wish to profit from their own cells have lost their legal battles to the greater good, the universal benefit, which sometimes goes hand-in-hand with the concept of follow-the-money. (See The Common Rule.)

The question is this: Tissues, body parts and fluids are removed from patients every day, just like Henrietta Lacks' cancerous cells were removed. What happens to them next? Most of us have no idea, except that we expect to get a report on the findings from those samples. (A good reminder to always follow up on your medical tests.)

There are several possible "next stops" for material removed from patients:

• Once the pathologist has reviewed and reported on the excised material, most of those samples - blood or tissue - are disposed of. You've probably seen signs in doctors' offices or hospitals that label "Bio-Hazardous Waste". The are laws and regulations that determine how this material will be treated and disposed of so it won't be dangerous.

However, not all blood or tissue removed from us is thrown out. Some of the bio-material is saved, then stored, donated, bought or sold, and used for research.

There are a number of outcomes for material that is not disposed of:

  • Depending on the reasons for collection, and the outcomes (diagnosis or further questions), some specimens are stored by the lab that first processed them. (See A Personal Story of Following Up on Medical Testing.)

  • Some of the blood, tissues and parts are donated to living people. The donation we are most familiar with is that of organ and tissue donation upon the accidental death of someone whose heart, liver, skin, eyes or other parts are given to someone else who needs them. We also hear of kidney, stem cell and other donations from a healthy, living donor to someone else who needs them to live.

  • Some of the material is forwarded to biobanks. Biobanks preserve, categorize, store and distribute different kinds of human materials to research labs that need specific kinds of cells and tissues to do their research. Many of these biobanks are funded and maintained by non-profit and government groups. In 2009, Time Magazine wrote an article about biobanking that explains it well.

  • Not all biobanks are non-profit or government, though. There is profit being made from some of that material removed from us. We don't profit, of course. But there are companies that are buying and selling the material removed from us. For-profit biobanks develop specialized niches of types of bio-materials, like specific cancer cells. They categorize them according to the person they were taken from (gender, age, medical diagnoses, and more.) They also preserve their specimens in different formats (frozen, or in paraffin) so researchers can test their protocols on cells differently preserved.

To the extent businesses, non-profits or government entities want to procure, buy, sell or otherwise distribute pieces of us, they have the right to do so. Just like was discussed in The Immortal Life of Henrietta Lacks, we patients have no legal say over anything removed from us, according to The Common Rule.

What about consent? Most of us would be surprised to know that we have probably signed some sort of consent giving someone the rights to use our removed body materials for whatever they might be used for.

Certainly there are times when consent is very visibly sought from patients or family, as in healthy organ, tissue or body donation situations (see the second scenario, above.)

But other times there are consent forms mixed in with other paperwork we sign, and it's possible (or probable) we didn't know what we were signing because we didn't pay enough attention. That makes it uniformed consent. But it's consent just the same, even though it's very possible the consent wasn't needed to begin with.

Does any of this make you wonder what might have become of a tumor, tissue or fluid removed from you?

It certainly made me wonder. So I went looking, and tracked it down. Here's my story about what became of the tumor removed from me in 2004.

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