Wondergenes: Genetic Enhancement and the Future of Society

6 Autonomy

Autonomy 6 Among the fundamental tenets of modern biomedical ethics, none is more basic than the right of self-determination. Physicians must obtain their patients’ permission before proceeding to treat them, and acquiesce to a refusal even if it means the patient’s death. Despite its centrality, self-determination in medical decision making is a relatively recent development. Until the early 1970s, physicians rarely left matters up to patients. The relationship between patients and physicians was paternalistic, so much so that it was called the “physician-patient relationship,” as if the physician were the more important party. Hippocrates even discouraged physicians from telling patients what was wrong with them, advising doctors to perform their duties “calmly and adroitly, concealing most things from the patient while you are attending to him”: Give necessary orders with cheerfulness and sincerity, turning his attention away from what is being done to him; sometimes reprove sharply and emphatically and sometimes comfort with solicitude and attention, revealing nothing of the patient’s future or present condition.1 84 Wondergenes It was not until the patients’ rights movement in medicine in the late 1960s, which arguably grew out of the general distrust of authority characteristic of those times, that courts and bioethicists began to give prominence to the principle of patient autonomy. The law began to acknowledge that physicians had a duty to obtain their patients’ informed consent to treatment, and patients gained the right to refuse to go along with what the doctor recommended , even at the cost of their lives. The case of Lauro v. Travelers Insurance Company illustrates the traditional view of the law.2 Mrs. Lauro found a lump in her breast. She underwent a biopsy, in which she was placed under general anesthesia, an incision was made, and a sample of breast tissue removed and sent to a pathologist, Dr. Nix. Dr. Nix performed a quick microscopic analysis of the tissue and concluded that it was cancerous. Mrs. Lauro’s right breast was removed while she was still under anesthesia. Later, after a more leisurely and careful analysis , Dr. Nix concluded that the lump had been a rare type of benign tumor that was difficult to distinguish from cancer using the rapid technique she had employed. Mrs. Lauro sued Dr. Nix for malpractice and ultimately lost. The debate between the judges on the panel that heard the case is what is instructive. A majority felt that Dr. Nix had acted properly even though she had been mistaken, while a dissenting judge felt that Dr. Nix should not have rendered an unequivocal diagnosis of cancer based on the rapid analytic technique she had used. The majority pointed to expert testimony about the risks of delay in case the tumor was in fact malignant, and the dangers of having to reanesthetize Mrs. Lauro if a subsequent mastectomy turned out to be necessary. The dissent argued that, based on testimony from other experts, a delay of a few days while the more thorough study of the tissue was conducted would not have created a significant risk that the cancer would spread, and that the hazards to Mrs. Lauro from being anesthetized a second time were outweighed by the benefit of avoiding the unnecessary loss of her breast. What is striking about the case is that in neither the majority’s or the dissent’s discussion is there any mention whatsoever of what Mrs. Lauro herself preferred. Evidently she wasn’t asked ahead of time which set of risks she wished to accept; her physicians had 85 Autonomy acted on their own initiative, and the outcome of the case hinged on the judges’ estimation of what they, rather than the patient, would have chosen to do under the circumstances. At the same time these judges in New Jersey were debating their preferences regarding Mrs. Lauro’s predicament, another case decided in the District of Columbia showed that the law was beginning to change dramatically. The D.C. case, Canterbury v. Spence, involved a patient who had become paralyzed after a laminectomy —an operation to remove a protruding portion of a slipped disk that was causing him severe pain.3 The plaintiff alleged that the surgeon had not warned him of the risk of paralysis, and therefore had proceeded without his consent. Judge Higgenbotham laid down the principles that define the modern relationship between physicians and their patients: the physician must...