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His reasoning brings together the purpose of his profession, his own natural affinity for debate and discourse, and the huge, painful, nagging questions about medicine and reproduction that are affecting more and more families and that beg for answers. As he writes in his first book, The Perfect Baby: A Pragmatic Approach to Genetics, published this year, "While the issues of biological reproduction 'matter' for society at large, for science, for business, for industry, and for religion, the sphere within which our decisions about genetics are primarily made is that of the family, and particularly the institution of parenthood."
For McGee, such a situation is intolerable. "Philosophical discussions of ethical issues in genetics, mostly written for scholars only, are unlikely to help parents," he argues, "not only because our typical jargon-ridden dense prose is intended only for specialists, but also because most of us have paid too little attention to the relevance quotient of our work for actual couples facing difficult choices." The scholarly community has "largely ignored our universities' promises to be of service to the community at large, and those of us who are philosophers are the most culpable."
He may be uniquely qualified to render such a judgment. For the bulk of his young life, he has watched the development of applied ethics. He is a second-generation bioethicist, perhaps the first ever. Born in Waco, Texas, he grew up with a father, Daniel, who is both a well-known theologian and one of the pioneers of bioethics. The younger McGee recalls accompanying his father to Georgetown University's Kennedy Institute of Ethics and other institutions where the fledging discipline was emerging.
As he progressed through his education -- at Baylor, where his father is on the faculty, and Vanderbilt -- and developed his own love affair with philosophy, he observed what he considers a major and persistent deficiency in academe: a disengagement from the dilemmas of real life. "So much of our respected and published philosophy eschews the murky, dark, and smelly places where human life happens."
McGee eventually resolved to tackle the smelly issues head-on, even if it meant giving up the pursuit of a promising career in theoretical philosophy. He guesses that he spends half his time teaching and interacting with the public. Part of that time includes media interviews, such as the one lingering in prospect at MSNBC. And some of it includes teaching classes at the Center for Bioethics. But much of it involves direct exchanges through one of his favorite projects: the center's new Website.
McGee's Website, which has won a dozen awards, was the very first on the subject on the Internet. "It's also the best," he adds, sounding characteristically Texan. "I guess I basically invented philosophy on the Web." The site includes an on-line virtual classroom in genetics, a page called "Bioethics for Beginners," several electronic forums, and a virtual library of articles and links to everything from plagues to the ethics of circumcision. It is used in classes from Idaho to Norway, he says, and has been featured on CNN and in dozens of magazines.
Since its startup in 1994, more than a million people have visited the site. In the few days after the stories about cloning began appearing, some 30,000 people logged on. McGee is ecstatic. "How many professors have an opportunity to spark intellectual curiosity in 30,000 people over a weekend?" he asks, beaming.
Engagement is the key, he firmly believes, but it must be with medical professionals as well as the general public. It is perhaps most critical to train and counsel doctors and nurses, because they are the most direct source of information for parents and families about what it means to have a healthy baby. The issues of modern reproduction are complex and often frightening. Yet medicine continues to avoid the personal and subjective aspects of treatment.
"Most Americans would be stunned at how little training in the physician-patient relationship most physicians actually receive. And most medical students today learn only a modicum of genetics and nothing at all about genetic tests or their implications for families and society," McGee says. Absent a studied and comprehensive response from medical professionals, parents are left to sort out baffling and often painful questions for themselves. "They make good and bad choices about how and when to have children, with whom, and under what circumstances," but most of it is done without the support of society at large.
McGee talks constantly about the inseparable relationship between biology and culture, about how nearly every contemporary decision concerning health and reproduction is somehow couched within a social context -- whether or not society acknowledges that relationship. It's up to bioethicists to demonstrate the connection, he says, to "provide a framework for discussion and evaluation that matters." And the best way to accomplish this is to work relentlessly to focus the discussion on "problems for real people living today, not facile test cases for some larger universal theory."
Take a family that discovers their unborn child carries an extra 21st chromosome, for what is commonly known as Down's syndrome. Suddenly, their medical records become a potential liability. They are faced with the prospect of a child whose fate is wildly uncertain. How bad will the Down's be? Will the medical care pose a huge financial burden? Should they opt for abortion? To whom should they turn for advice? They may rely on their parents or siblings, or neighbors, friends, or clergy for guidance. But answers to their questions, McGee says, are not to be found in the current public discussion about pregnancy, genetics, and the family.
More such conundrums are likely to confront parents as genetic testing proliferates. Consider two further examples:
Testing reveals that a fetus likely will develop Huntington's disease, a severe disability that usually appears when a patient reaches his or her mid-40s. A person can have a completely normal life until then, but at 45, that life will come to an abrupt and painful halt. Should the parents consider aborting that child? Or should they gamble that a cure will be found in 40 years? Continued ...
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