Word: consent
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...present. Medical experimentation, which invokes the claims of the future, necessarily turns people into means. That is why the Nuremberg Code on human experimentation (established after World War II in reaction to the ghastly Nazi experiments on prisoners) declares that for research to be ethical the subject must give consent. The person is violated if it is unwillingly-even if only uncomprehendingly-used for the benefit of others...
Even so, many questions have been raised about the way in which consent was obtained. The hospital's refusal to release the text of the form signed by Fae's parents fueled the controversy. This document "is crucial," says Arthur Caplan, a medical ethicist at the Hastings Center in Hastings-on-Hudson, N.Y. "Were the parents informed about the possibility of a human heart?" Others felt that Bailey may have misrepresented the facts about the "Norwood procedure," a surgical treatment recently developed to help infants with hypoplastic heart. Indeed, in his public statements, Bailey understated the success rate of this...
WRITING THE BIOGRAPHY of James Boswell, whose Life of Johnson is by common consent the greatest biography ever written, is a task that appears to damn the writer before his ink meets paper. All the more so if one considers that Frank Brady's new book on Boswell's later years completes the cycle started with the 1966 study of Boswell's early years by Federick Pottle, the most esteemed Boswell scholar in literary history. Yet Johnson, who himself overcame a lifetime of adversity, might well have admired a man who persevered despite such an intimidating legacy. Brady's years...
...defects other than her hypoplastic heart, was the first infant to come to Bailey's attention who met the criteria for his experiment. As in the case of the late Barney Clark, who in 1982 became the world's first recipient of a permanent artificial heart, an elaborate consent form had been prepared. Fae's parents signed the form once, then thought over their decision for 20 hours before signing it the required second time. According to the hospital, the couple were well informed of the risks and the alternatives...
That admission raised the larger question of whether Baby Fae's parents had been properly advised of possible alternatives to the baboon heart. "If they didn't even look for potential life-saving alternatives, what does this mean in terms of the 'informed consent' of the parents?" asked Michael Giannelli, science adviser for the Fund for Animals. According to Minnesota Surgeon Najarian, Baby Fae's doctors should have recommended a form of corrective surgery for hypoplastic heart developed by Dr. William Norwood, chief of cardiac surgery at Children's Hospital of Philadelphia. Norwood's procedure, which is practiced at only...