This article is an excerpt from the Shortform summary of "The Immortal Life of Henrietta Lacks" by Rebecca Skloot. Shortform has the world's best summaries of books you should be reading.
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What happens to samples taken from your body? Are there human tissue rights that apply even once your tissue is out of your body? How are human tissue sales related to organ sales?
“Organ sales” is a term that refers generally to the sale of any human organ, like a kidney. Selling organs is generally prohibited. Similarly, you usually can’t sell your own tissue, but tissue ownership ends when your tissue leaves your body.
Learn about the intricacies of human tissue sales and how tissue rights and ownership change once your tissue has already been excised.
Tissue Ownership: The Case of Henrietta Lacks
In 1951, Henrietta went to Johns Hopkins Hospital for cancer treatment. The surgeon performing the initial treatment, without telling Henrietta, excised two slivers of tissue from her tumor for a researcher at Hopkins named George Gey.
Skloot is often asked whether Gey’s taking of Henrietta’s cells without consent was illegal. It wasn’t in 1951—and, as of 2009, it still wasn’t.
Human Tissue Rights and Ownership in Practice
When Americans go to the doctor to have blood drawn, a mole removed, or any sort of “ectomy” (i.e., tissue or organs excised), it’s perfectly legal for doctors and hospitals to keep samples for tissue research. A 1999 study from the RAND Corporation estimated that tissue from more than 178 million Americans was stored in the US and that the library of tissues was growing by more than 20 million samples a year. The samples are stored in a number of places—hospitals, laboratories, federal agencies, military facilities—and include everything from appendixes to blood to fat cells to foreskins from circumcisions.
And the tissue industry is only growing. For example, 23andMe, the company that provides customers with genealogical information based on a saliva sample, will only analyze samples if the customer agrees to allow their samples to be used for further tissue research. That’s the tissue ownership policy for 23andMe.
Tissue Rights Laws
In the debate over people’s rights to their tissues, there are two issues of prime importance for tissue rights laws: consent and remuneration.
In terms of consent, the Federal Policy for the Protection of Human Subjects—more commonly known as the “Common Rule”—mandates that researchers must have informed consent before conducting studies or experiments on human subjects. The problem is that most tissue research isn’t federally funded and the researcher never comes into contact with the actual human who provided the samples: the subject is the sample, not the human. Doctors must get informed consent from a potential subject if they want to remove tissue for research, but if they want to conduct research on already-removed tissue, they don’t.
The other facet of the debate concerns money—whether patients should be informed if their tissues will be used in commercial enterprise and whether they should be compensated. Under current law, selling organs is illegal, as is selling tissues for research or transplants. However, companies turn profits processing those organs and tissues that humans donate freely.
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Here's what you'll find in our full The Immortal Life of Henrietta Lacks summary:
- How Henrietta's cells became used in thousands of labs worldwide
- The complications of Henrietta's lack of consent
- How the Lacks family is coping with the impact of Henrietta's legacy