Panel to Advise Testing Babies for 29 Diseases

The New York Times article (registration required)

"An influential federal advisory group plans to recommend in the next few weeks that all newborns be screened for 29 rare medical conditions, from the well known, like sickle cell anemia, to diseases so obscure that they are known to just a handful of medical specialists and a few dozen devastated families.

"But while no one argues with the idea of saving babies, the proposed screening is generating fierce debate.

"The dispute centers on how useful the test findings would be. Would going ahead with the full list of tests result in more good than harm, physically and emotionally? Or would it be better to forgo most of them?"

This controversy raises interesting questions. For example, when is it better not to obtain knowledge? When is the cost of obtaining knowledge not justified by the benefits that are likely to flow from that knowledge? Would it be acceptable to run a panel of tests on a sample of the population to provide epidemiological data, even if it were not justifiable to run the panel on all children to enhance medical care of the individuals? If so, what information would one ethically give the parents?

Thinking about Knowledge for Development is not always easy!