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CHAPTER 10 THE ETHICS OF GENETIC ENGINEERING A new revolution is sweeping medicine. The first revolution in Western medicine occurred in 1854, when British surgeon John Snow discovered that cholera was spread by contaminated water, ushering systems of sanitation that saved millions from deadly infections. The second revolution also happened toward the end of the nineteenth century, with the use of anesthesia in surgery, which made it possible for surgeons to perform operations within the body cavity, as in the case of appendicitis. The third revolution saw the arrival of vaccines and antibiotics, which helped prevent or cure a host of infectious diseases. For all these strides, Western medicine has at best remedied infectious diseases and some surgical problems , but it has not “cured” anything. Drugs and surgery make it possible for the body to heal itself; they relieve symptoms without rectifying the underlying problems. The fourth medical revolution promises to change all of that. It is the genetic revolution, armed with new technologies that will enable us to improve on nature. Dr. W. French Anderson, a pioneer of human genetic engineering and indeed “the father of gene therapy,” predicts that within thirty years, there will be a gene-based therapy for most diseases. Human genetic engineering will not only profoundly change the practice of medicine, but will impact every aspect of our culture . The big question it poses for ethics is: How far should we go? Human genetic engineering or gene therapy is based on an understanding of the body in which genes provide the system of defense and healing. Genes protect the body, repair damage, and restore it to health. As with the doÓsa theory of disease in Åyurveda, when genes become abnormal they not only produce “genetic” diseases, such as sickle-cell anemia and Huntington’s disease, but can also contribute to cancer and heart disease. Crawford: Hindu Bioethics page 150 Crawford 113-198-226 8/21/03 11:36 AM Page 150 Hence, Anderson’s final solution: “If we want to cure a disease, therefore, we must do it at the level of the genes.”1 The movement to fight diseases with altered or new genes is just beginning . In 1990 the Human Gene Therapy Subcommittee (HGTS) approved the first gene therapy protocol. It was from Michael Blaese and French Anderson for gene therapy on children, including Ashanti De Silva, who suffer from severe combined immunodeficiency (SCID), often called the “bubble-boy” disease, because its most famous victim was encased in a plastic bubble during his short life to protect him from infection . One form of SCID called ADA deficiency is caused by a defect that blocks production of adenosine deaminase, a key enzyme; without it, important immune-system blood cells are immobilized. In a speech delivered here in Honolulu,2 at which the author was present, Blaese described how his team at the NIH, in September 1990, performed successful gene therapy on Ashanti “Ashi” De Silva, now a normal teenager. Four months later, the group performed the same therapy on Cindy Cutshall, then nine. Both girls were afflicted with ADA. Because of a flawed gene, the Tcells of their immune system were not able to produce ADA, the enzyme necessary for their survival. To treat the children, the NIH team took viruses from mice, engineered them to remove the genes, then replaced them with normal ADA genes. Though the experiment was novel and brilliant, Blaese and fellow scientists knew that the girls had been treated but not cured. Altered blood cells survive only for a few months, necessitating repetitions of the procedure. To effect a complete cure, gene therapists would have to get to the source of the problem: the long-lasting stem cells that reside in bone marrow and produce all the white blood cells that circulate in the bloodstream. And that is precisely what Blaese did. He inserted healthy ADA genes into stem cells drawn out of Ashi’s bone marrow. He then inserted the altered cells into the bloodstream, hoping they would find their way back to the marrow. In an informal interview with a Honolulu reporter, Blaese said: We’re still very early in development of this treatment, but worldwide, several thousand patients have received gene therapy directed at one or another disorder. A whole series of gene therapies for cancer are going through clinical trials and other trials are under way. Crawford: Hindu Bioethics page 151 The Ethics of Genetic Engineering 151 Crawford 113-198-226...

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