Krabbe Newborn Screening: The Issue of Informed Consent

In their article, Dees and Kwon (2013) describe the case of newborn screening for Krabbe disease and argue compellingly that a mandatory newborn screening program for this disease is problematic in several respects. Therefore, they submit, testing on Krabbe disease should only be offered on a voluntary basis, under a research protocol. In my opinion, Dees and Kwon are correct to point out the problematic character of a mandatory screening program for Krabbe disease. Their move toward a research paradigm is however problematic. More specific, their proposal presents problems for the role of informed consent in Krabbe testing.