Shattered Nerves: How Science Is Solving Modern Medicine's Most Perplexing Problem

16 Ethics

∑ 16 Ethics Throughout history, there have been those who have voiced concerns about virtually every step in man’s relentless quest to control his environment , cure diseases, and generally improve his lot. Yet, for better or worse, nothing has prevented the forward march of technology. The industrial revolution brought more goods to more people, along with sweat shops. Unleashing the awesome power of atomic fission brought relatively clean atomic energy, and the atomic bomb. Medical research has eradicated many diseases, cured millions of people of illness, improved the quality of life, and extended the lifespan of many in the industrialized world. Yet in its quest to overcome the maladies plaguing humankind, medical science has also taken some wrong turns, as in the case of the Tuskegee Syphilis Study, revealed in 1972, in which the U.S. Public Health Service and the Tuskegee Institute studied nearly 400 black men infected with syphilis who were never told they had the disease nor were treated for it. And there were the infamous Willowbrook experiments conducted between 1963 and 1966 at the Willowbrook State School for children with mental retardation on Staten Island, in which residents were deliberately infected with the hepatitis virus to study an inoculating agent. Parents gave their consent, but they were told their children were being given vaccinations. Though safeguards have since been put in place, the field of neural prosthetic research raises numerous ethical questions of its own. Yet in the case of neural prostheses, it is di≈cult, if not impossible, to find a researcher who 252 Shattered Nerves has not to one extent or another considered the ethical implications of what he or she is doing. This is at least in part because of the fact that numerous groups are getting a jump start on the social implications of this vast new field by holding meetings, seminars, and panel discussions among scientists and bioethicists—whose numbers are rapidly increasing in hospitals, universities , and think tanks—to discuss the implications of the technology. Questions being considered by these experts include: Should some facets of neural prosthetic technology, such as implanting electrodes in the brain, be pursued at all? When is an implant ready for human testing? How can researchers ensure that human test subjects are made fully aware of the potential risks involved? Once these devices are approved for clinical use, who should receive them? And who should pay for them? And, should they be used not only therapeutically to assist the disabled but also to enhance the natural abilities of the able-bodied, for example, to increase memory, instantly download knowledge—like a new language—or expand the wavelengths one can see and hear? Mary Faith Marshall, professor and dean for professional conduct and humanities at the Center for Bioethics of the University of Minnesota Medical School, addressed these questions at a 2005 conference held at the Library of Congress entitled ‘‘Hard Science, Hard Choices: Facts, Ethics & Policies Guiding Brain Science Today.’’ Marshall warned her audience of physicians, neuroscientists, bioengineers, and ethicists that even though they are attuned to the ethical issues surrounding neural prosthetic research ‘‘and take them very seriously, we can also go very seriously wrong.’’ This can happen when well-meaning but overzealous researchers overlook the wellbeing of the individual in the quest for knowledge that could benefit many. ‘‘When you are applying a standard of care to an individual, you put the interest of the individual first. Within the research context, that doesn’t always work when we are searching for new knowledge,’’ she said. Marshall advised that avoiding excessive exuberance does not mean one can or should eliminate emotion from decision making. ‘‘People who do that are psychopathic in some sense,’’ she said. However, emotion should not overrule reason. This holds true both for researchers and human test subjects , who may be desperate for a cure and swayed to overlook risks by any Ethics 253 suggestion of benefit. The question of how best to obtain truly informed consent from test subjects is a major concern among neural prosthetic investigators . Before this issue is dealt with, however, the decision must be made as to when a particular neural prosthetic system is ready for human testing. While there are many hurdles, both governmental and institutional, that developers must overcome before obtaining approval for such testing, in the final analysis, it is the researchers’ decision when to apply for approval and their job...