types of samples are collected immediately after childbirth, a context in which informed consent is difficult at best [B-4]. As several panels discussed [B-4; D-4], recent legal battles in Texas and Minnesota have highlighted the “gap between law and ethics” when newborn screening samples are used for research without informed consent by parents. One panel reported that efforts to engage the public on the issue of research using newborn screening samples have resulted, on the one hand, in a recognition of the public’s desire for explicit requests for consent when such samples are used for new research, and, on the other, in greater public understanding and support of the value of such research [D-4].
