What is the evolution of laws concerning tissue research with reference to The Immortal Life of Henrietta Lacks by Rebecca Skloot?
As Rebecca Skloot explains in The Immortal Life of Henrietta Lacks, patients such as Henrietta Lacks did not have to give their physician consent to harvest their cells in 1951. During this time, it was assumed that doctors knew best, and African-American patients in particular had little power to question their doctors. As Skloot writes, "there is no record that George Gey ever visited Henrietta in the hospital or said anything to her about her cells" (page 66). Gey was the researcher who cultured Henrietta's cells to create a cell line that was used in research.
In 1980, the Supreme Court ruled that biological things could be patented in the case of Ananda Mohan Chakrabarty, a General Electric scientist who patented a bacterium that could eat oil and therefore help clean up oil spills. In the 1980s, a man named John Moore, a surveyor on the Alaska Pipeline who was being treated for a form of leukemia, sued David Golde, a UCLA cancer researcher, and UCLA, because Golde had been using Moore's cells and the proteins they produced. Golde had received $3.5 million to develop the Mo cell line that came from John Moore. Though Moore had given his consent, he did not know that the doctor had been selling his cell line. When Moore started his law suit in 1984, he was, as Skloot writes, "the first person to legally stake a claim to his own tissue and sue for profits and damages" (page 203). Seven years later, the Supreme Court of California ruled against Moore and said that when tissues are removed from someone's body, they no longer have a claim on them. This suit was what scientists had wanted so that they could pursue their research as part of the medical process.
As Skloot writes, "today most Americans have their tissues on file somewhere" (page 315). When people have a blood test or another procedure such as a tonsillectomy, the hospitals often keep their tissues or other samples. The practice of keeping blood and tissues does not require consent. The Federal Policy for the Protection of Human Subjects, which requires informed consent for research, does not apply to most tissue research because it's generally not funded by the federal government and the researcher doesn't know who the donors are. However, a growing movement of tissue-rights supporters believe that people should know that their tissues are being used and have the right to control how they are used.