Why did advances in genetic research necessitate establishing the legal requirements that doctors or researchers obtain informed consent documentation prior to taking DNA samples from patients for research?
Advances in genetic research required the establishment of legal requirements that researchers or doctors obtain informed consent documentation before taking DNA samples from patients for research because patients end up filing lawsuits against researchers if they don’t like what they do with the acquired DNA samples. The Mo cell line was developed by David Golde from the spleen cells of his patient, John Moore. John Moore was diagnosed with hairy-cell Leukemia. Golde made Moore sign a consent form that would allow the hospital to surgically remove his spleen and “dispose of any severed tissue or member by cremation” (Skloot, 143). Golde patented the cell line because Moore’s cells produced unique proteins and the law didn’t require “informing or getting permission from the ‘cell donors’” (Skloot, 145) by the doctors or researchers to patent cells. Moore filed the lawsuit because he had suspicions that his cells were being cultured for profit when his doctor started bribing him (i.e paying for his plane tickets so he can come back for his follow-ups). Moore says, “It was very dehumanizing to be… referred to as Mo in the medical records: “Saw Mo today.’ All of a sudden I was not the person Golde was putting his arm around… I was the cell line, like a piece of meat” (Skloot, 144). In the case of the Lacks family, John Hopkins doctor Victor McKusick ordered Susan Hsu to obtain DNA samples from Henrietta Lacks’s immediate family to map all their genes. Hsu didn’t give them consent forms and from what they understood, they were getting tested for cancer. What McKusick really did was mapped the DNA of Henrietta, her husband, and their children and published that publicly, which was an invasion of the Lackses’ privacy, considering “how much can be deduced from DNA, including the risks of developing certain diseases” (Skloot, 142).
References: Skloot, R. (2010). The immortal life of Henrietta Lacks. New York: Crown
I would like to say that if scientists asked for my consent to study my tissue, I would let them, but only under the circumstances that I was maybe diagnosed with a fatal disease with an unknown cure. However, frankly, I would not let my tissues be studied. It may benefit me to allow them, as it can prolong my life if they successfully find a cure but, although not all are, many “professionals” in the scientific field can be manipulative and deceitful especially if they find something they really want in their patients. I could be sitting in a doctor’s office, being told that I have a tissues metastasizing in my ovaries. The doctor would look at me and say that my ovaries need to be extracted, and I, given a consent form, would be asked, “Would you let me and my fellow colleagues study your tissues after it’s removed? You could make important contributions to science.” Then what really happens is they start culturing my cancerous ovarian cells, selling them to other scientists to poke sticks at or to send to outer space. They get all the credit and I get dehumanized to “HaCa”. It’s not just the crumbling of my humanity that I’m concerned about but also the fact that I’m giving my “consent” for scientists to extort the entire human race. I wouldn’t be contributing to science – I would be contributing to and encouraging the corruption that revolves in the scientific field.
Advances in genetic research required the establishment of legal requirements that researchers or doctors obtain informed consent documentation before taking DNA samples from patients for research because patients end up filing lawsuits against researchers if they don’t like what they do with the acquired DNA samples. The Mo cell line was developed by David Golde from the spleen cells of his patient, John Moore. John Moore was diagnosed with hairy-cell Leukemia. Golde made Moore sign a consent form that would allow the hospital to surgically remove his spleen and “dispose of any severed tissue or member by cremation” (Skloot, 143). Golde patented the cell line because Moore’s cells produced unique proteins and the law didn’t require “informing or getting permission from the ‘cell donors’” (Skloot, 145) by the doctors or researchers to patent cells. Moore filed the lawsuit because he had suspicions that his cells were being cultured for profit when his doctor started bribing him (i.e paying for his plane tickets so he can come back for his follow-ups). Moore says, “It was very dehumanizing to be… referred to as Mo in the medical records: “Saw Mo today.’ All of a sudden I was not the person Golde was putting his arm around… I was the cell line, like a piece of meat” (Skloot, 144). In the case of the Lacks family, John Hopkins doctor Victor McKusick ordered Susan Hsu to obtain DNA samples from Henrietta Lacks’s immediate family to map all their genes. Hsu didn’t give them consent forms and from what they understood, they were getting tested for cancer. What McKusick really did was mapped the DNA of Henrietta, her husband, and their children and published that publicly, which was an invasion of the Lackses’ privacy, considering “how much can be deduced from DNA, including the risks of developing certain diseases” (Skloot, 142).
ReplyDeleteReferences:
Skloot, R. (2010). The immortal life of Henrietta Lacks. New York: Crown
DeleteHi Hanna, a personal question here: would you allow consent for your own tissue samples to be used for research? Why or why not?
DeleteI would like to say that if scientists asked for my consent to study my tissue, I would let them, but only under the circumstances that I was maybe diagnosed with a fatal disease with an unknown cure. However, frankly, I would not let my tissues be studied. It may benefit me to allow them, as it can prolong my life if they successfully find a cure but, although not all are, many “professionals” in the scientific field can be manipulative and deceitful especially if they find something they really want in their patients. I could be sitting in a doctor’s office, being told that I have a tissues metastasizing in my ovaries. The doctor would look at me and say that my ovaries need to be extracted, and I, given a consent form, would be asked, “Would you let me and my fellow colleagues study your tissues after it’s removed? You could make important contributions to science.” Then what really happens is they start culturing my cancerous ovarian cells, selling them to other scientists to poke sticks at or to send to outer space. They get all the credit and I get dehumanized to “HaCa”. It’s not just the crumbling of my humanity that I’m concerned about but also the fact that I’m giving my “consent” for scientists to extort the entire human race. I wouldn’t be contributing to science – I would be contributing to and encouraging the corruption that revolves in the scientific field.
Delete