The Immortal Life of Henrietta Lacks, by Rebecca Skloot was an interesting read. It took me back to my Bioethics class at BYU. The book touches on some really important, but controversial issues, including tissue ownership, informed consent and cell-line research.
I liked that Skoot took a holistic approach to telling the story. I am really glad she didn't paint out all the scientists and doctors as heartless people. I was impressed to learn that the Doctor who took the cancer cells from Henrietta Lacks, was willing to have experimentation done on his cells. Dr. George Gey [pronounced
guy] first grew the HeLa cell line. When he found out he had pancreatic cancer, he insisted the surgeons take samples of his tumor while Gey was being operating on. Gey was willing to use himself as a test subject (171).
So, random interpolation, I have thought for years now that science could be art. One time I walked into the pathology lab I was researching in and some crystal violet was left in the sink. It was a like an oil spill of gold and dark purple. I really wanted to take a picture. When I would look thorough the microscope at gram stained cultures, I was amazed at how remarkable they were. Skoot writes, "Christoph had famed a foutreen-by-twenty-inch print of Henrietta's chromosomes that he'd "painted" using FISH [fluorescence in situ hybridization]. It looked like a photograph of a night sky filled with multicolored fireflies glowing red, blue, yellow, green, purple, and turquoise" (234). I am really happy that I am not the only one who thinks photographs from science can be art.
It is sad to read about morally reprehensible studies that were carried out before government legislation protected the rights of patient subjects. Skloot gives examples of several cases where doctors experimented on patients without the patients knowledge or consent. While today, human studies are fiercely regulated, and patients have control over what happens to the cells still living in them, patients lose the rights to their tissues after those tissues are removed from their bodies.
When John Moore's spleen was removed and then used for profitable research, Moore sued David Golde, the Doctor who took his spleen. But Moore lost the initial suit and eventually lost his suit against the Supreme Court of California, which ruled, "When tissues are removed from your body, with or without your consent, any claim you might have had to owning them vanishes" (205). A similar situation happened to Ted Slavin, but there is a critical difference between the two cases; the doctor treating Slavin told him how valuable his cells were before they were removed. Therefore, Slavin was in control of what happened to his lucrative tissues (202).
It is a tricky issue to deal with. It seems logical that a person's cells should still be considered their property even after those cells are removed, however, the judge ruling on the case feared litigation disputes over cell ownership would impede valuable research. However, because of the ruling, scientists were able to claim ownership of the cells, which ended up impeding research.
Myriad Genetics, a company in Utah, was referenced as one of the companies that holds patents for genes (BRCA1 ad BRCA2). In the Afterward, Skoot writes "In May 2009 the American Civil Liberties Union, several breast-cancer survivors, and professional groups representing more than 150,000 scientists sued Myriad Genetics over its breast-cancer gene patents. Among other things, scientists involved in the case claim that the practice of gene patenting has inhibited their research, and they aim to stop it. The presence of so many scientists in the suit, many of them from top institutions, challenges the standard argument that ruling against biological patents would interfere with scientific progress...Many scientists have interfered with science in precisely the way courts always worried tissue donors might do" (324).
It is a tricky issue. While the original cells studied may have come from Lacks, Moore and Slavin, they did not have the tools or skills necessary to personally do anything with their cells. It was necessary for researchers to analyze and synthesize those cells before they were useful. Furthermore, because of the research done in the past century with individual cell lines, HeLa cells especially, thousands, if not millions of lives have been saved. Although, if doctors are taking samples away from the patients without informing them, or compensating them, the least the doctors can do is make those samples available so everyone can benefit from the cures developed from those cells.
