To Protect and Do No Harm

Bioethicist Ruth Faden spends her days balancing what is medically possible against what is right, on a national scale.

March 30, 2003|By LINELL SMITH | LINELL SMITH,SUN STAFF

News from the world of bioethics often produces a high-tech tangle of science: Stem-cell therapy ... reproductive cloning ... pre-implantation genetic diagnosis. Then a headline hits home: Hospitals Outline Smallpox Vaccination Plan.

The vaccination: To get it or not to get it?

To be safe in case of a biological war that seems increasingly possible? Or to risk needless side effects, illness, perhaps even death?

Bioethicist Ruth Faden takes the matter further: Should those who are healthiest have a duty to be vaccinated to keep the disease from spreading to those most apt to be harmed by it?

Faden, who directs the Phoebe R. Berman Bioethics Institute at Johns Hopkins University, has been thinking about the many implications of national smallpox vaccination for quite some time. It's her job to encourage the right people to take on such complex issues so that public policy can be both reasonable and ethical.

"One of the really big questions is the question of compensation," she says. "So what ought to happen if someone becomes ill from the vaccine?

"We've thought through a set of commitments for what we owe those who put their lives in harm's way on a military context or law enforcement context. But what are we going to do if people are in harm's way merely because they live in the United States and are the subject of hostile attacks? ... Do we want to fold what we ought to do with respect to smallpox into the model that already exists for children harmed as a consequence of traditional childhood immunization?"

Faden knows the final decisions will be made by politicians, the same group that voted for the victims' compensation fund after Sept. 11 without thinking clearly about its premise or consequences.

This is why she wants to get people talking about such issues now, why she has written newspaper articles about this proposed defense against bioterrorism. She wants knowledgeable discussion: On smallpox, on stem-cell therapy, on health care rationing, on genetic testing, on physician-assisted suicide, on HIV-AIDS, on informed consent, on the many pressing medical and scientific issues beginning to shape life in the 21st century.

And she's looking for all points of view -- just as she did nine years ago when she chaired the president's advisory committee on human radiation experiments. Faden says part of her role is to bring together many minds from many disciplines to consider the ethical fallout from scientific success.

"This work is humbling, really humbling," she says. "I feel like I've really begun to accomplish something if there begins to be careful attention to 'This is a problem.' "

But how many problems can you field at once? Several years ago, in the days when grandmothers started giving birth to triplets, a student of Faden's voiced the unspoken:

"She said, 'How do you keep up with the Freak of the Week phenomenon?' " the bioethicist recalls. "It's a horrible way of phrasing it, but some weeks do feel like that. You get up in the morning and you're afraid to look in the newspaper."

Ruth Faden is rushing to another meeting. Petite, bright-eyed, impeccably dressed, the 53-year-old scholar is pulling a small suitcase on wheels that serves as her briefcase. Despite a bad back, the pace is brisk. "Fast women run in our family," her mother used to say, and whatever Faden does seems to have particular urgency and focus.

Take her ability to chair a meeting, for instance. To consider all perspectives while moving forward in an effective, timely manner -- hardly small potatoes when you're steering philosophers, surgeons, lawyers and others with lots to say. It's as if she's conducting different sections of an orchestra, one colleague notes, recognizing the strength of different voices and helping them work together.

"In a room full of very smart people, Ruth's not afraid to say 'Gee, I'm not sure about that.' Or 'I'm not sure what the right answer is,' " says Joe Carrese, a Hopkins physician affiliated with the institute. "While typically she's the one with the brilliant insights, she's not afraid to say if she doesn't have the absolute handle on what should be done or how it should be done. It invites everyone to let down their guard and think more creatively."

Over the past eight years, Faden has managed to guide the Bioethics Institute into a highly respected, highly independent star in the vast Hopkins universe. Scholars associated with the center have helped develop guidelines in such areas as obtaining fetal tissue for stem-cell research. They have discussed the care of dying patients and the protocol of AIDS research in developing countries. They helped set the national guidelines under which pregnant women and newborns should be tested for HIV. Faden has also helped facilitate the process of self-examination: She contributed to the inquiry into Hopkins' own research practices after the death of a 24-year-old volunteer in a 2001 asthma study.

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