In 1951, it was not illegal for doctors to take Henrietta’s cells for research without consent. By 1999, when The Immortal Live of Henrietta Lacks was published, there was still no clear law requiring that patients give consent for the scientific use of their own bodily tissues. In fact, human tissues are still constantly collected and used for research without patients’ knowledge.
“Today most Americans have their tissue on file somewhere,” Rebecca Skloot writes. Nearly any time patients give blood or have any bodily tissue removed, the excess matter is stored away in tissue banks. Very little of this material has any financial worth of its own, but all of the material in combination is extremely useful for medical research.
The debate about the use of human tissue in research is ongoing. Skloot notes that:
people often have a strong sense of ownership when it comes to their bodies…But a feeling of ownership doesn’t hold up in court.
Interestingly, most patients who learn about the use of their tissues in research want information and the right to influence how it is used, but most have not demanded monetary compensation. A few individuals and groups have managed to remove their own or their families’ tissues from research situations, but no clear ethical standards have ever been created.
Rebecca points out that it is not exactly bad that medical companies make money off of biological materials. Money enables these companies, which serve a vital function, to exist. She writes, “Like it or not, we live in a market-driven society, and science is part of that market.” However, she suggests that the thorny ethical issues regarding money, human tissues, and human rights need further sorting out.
Few patients have ever attempted to benefit financially from the scientific use of their tissues. John Moore, who lost his...
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