PCBE: The Ethics of Newborn Screening

March 15, 2008

Now, what makes the moral issues, the ethical issues in newborn screening difficult to grapple with is, as Adam correctly points out, that there is a plurality of issues pulling our judgment in different directions. There is in the first place the issue of informed consent, then the putative right of an individual “not to know.”

There’s also the traditional principle that interventions are justified only if they directly benefit the patient, which it seems is not the case in all of the possible outcomes of screening of newborns. There’s also the potentially harmful effects of having screened a newborn for conditions for which there is no treatment, and also or finally, the negative consequences of genomics, perhaps issuing in eugenicide —a word, I don’t know, invented, perhaps, by our staff— eugenicide , which is aptly described as purifying future generations of their undesirable members. (President’s Council on Bioethics)