In lieu of an abstract, here is a brief excerpt of the content:

  • News from the President’s Council on Bioethics
  • F. Daniel Davis (bio) and Diane M. Gianelli (bio)

As most readers of this column already know, the President's Council on Bioethics went through a major transition during the past year when Leon Kass—in October 2005—handed the chairman's gavel over to Georgetown University's Edmund Pellegrino. Dr. Kass has remained on the Council as a member.1

When the gavel change took place, the Council's phone started ringing. Everyone wanted to know the same thing: What topics would the Council take up this term? Dr. Pellegrino's answer was always the same: The Council's agenda would be established through a consultative process with the members themselves and with an eye to those problems and controversies in bioethics to which we, as a body, can make a contribution.

Taking its cue from the list of potential topics suggested by members, the Council—over the course of the next several meetings—listened to experts on such topics as children and bioethics (with a focus on children in clinical research), organ transplantation, and that oft-cited-but-hard-to-define concept, "human dignity."

The latter topic entered the arena of discussion because it is a concept that is cited frequently in the bioethics literature, and it is also one that has figured prominently in Council discussions and documents. Although the concept is widely invoked, there is no universal understanding of what it means, and it is not easy to encapsulate into a one-size-fits-all definition. Indeed, some critics maintain that appeals to human dignity are fig leaves used to camouflage unconvincing arguments. So between December 2005 and April 2006, the Council devoted several sessions to various perspectives on "human dignity: its meaning, its foundations, and its relevance to bioethics." After hearing from James Childress, Patricia Churchland, Daniel Sulmasy, and Paul Weithman2 on the topic, the Council decided to issue a volume of approximately 20 essays, some by Council members and others by scholars from a variety of relevant disciplines.3 The volume is expected to encompass a broad array of opinion on the topic of human dignity and is scheduled to be published next spring.

"Children" were also the focus of several sessions during the past year. The Council's last report addressed care giving for the elderly.4 After it was issued, several members suggested it was time to focus on the youngest members of [End Page 375] society. The challenge, of course, was to find a topic that was both timely and relevant—and one about which the Council was uniquely qualified to make a contribution. A number of experts in a variety of related fields testified before the Council about possible issues it could explore: newborn screening for genetic disorders; decision-making standards for those who lack capacity; ethical issues in neonatal and pediatric intensive care; pharmacology and psychiatric disorders in children; and children and clinical research. In addition, a number of groups and individuals involved in related topics met with staff to discuss their interests and concerns.

This exploratory engagement with facets of the broad topic of children and bioethics led the Council to focus, more narrowly, on a cluster of issues concerning newborn screening for genetic disorders—a topic on which it is likely that the Council will issue a white paper, possibly by next summer. The stimulus for this particular focus has been the American College of Medical Genetics's recommendation that all newborns in the U.S. be screened for a panel of 29 disorders.5 Currently, each state decides for its residents which conditions are subject to mandated screening, so it is possible to get early diagnoses of treatable disorders in one geographical area but not in another. Proponents of screening find the federal approach to mandated screening more equitable. Potential ethical problems, however, exist with the proposal. Some want to ensure that newborns are screened only for treatable conditions on grounds that it would be too burdensome to discover one is carrying the gene for a late-onset disease that cannot be prevented. Others want to make sure that insurance coverage for individuals and their families is...

pdf

Share