This paper considers the ethical issues raised by biobanking of material from children who are not mature enough to give ethically valid consent. The first part considers consent requirements for entry of such materials in the biobank, whereas the second part looks at the issues that arise when a competent child later wants to withdraw previously sored materials, and at the issues that arise when there is informational entanglement between information about a parent and information about a child. The paper (...) argues for three main conclusions:That it is in most cases acceptable for parents to give proxy consent to entry of material from their children ino biobanks, even though this is not strictly speaking in the best interest of the child;that a right to withdraw from the biobank is more important when material has been entered with proxy consent; andthat disputes about the withdrawal of entangled information, i.e. information that is both about a parent and a child, should be resolved in favour of the child. (shrink)

Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the (...) range of consent strategies, and gaps in our understanding, and concluded with a proposal for broad initial consent coupled with oversight and, when feasible, ongoing provision of information to donors. This article describes areas of agreement and areas that need more research and dialogue. Given recent proposed changes to the Common Rule, and new guidance regarding storing and sharing data and samples, this is an important and tim.. (shrink)