Who's Cutting the Cord? Social and Ethical Implications of Using Publicly Banked Umbilical Cord Blood for Genetic Research

Since the first successful cord blood transplant in 1988, many private and public cord blood banks have been established across the US and internationally. While most private banks remain focused on storage for possible future clinical use by donor families, many public cord blood banks take a dual-use approach, storing samples for both transplantation and research purposes, including possible gene-environment studies or longitudinal research using cord blood and maternal samples potentially over the course of the child's life. This presentation discusses the ethical, legal and social implications of re-purposing stored cord blood for genetic research and/or public health. While the banking of cord blood for research raises similar ethical issues as other types of genetic repositories regarding the process of obtaining informed consent, disclosure of research results, and donor confidentiality, it also raises a number of unique challenges given the context under which these types of samples are collected. Additionally, because umbilical cords are associated with both mothers and their children, the use of cord blood for research raises a number of ethical issues related to public health, genetic research, and biobanking throughout the lifecourse, such as the rights of children to re-consent for the continued use of their samples once they grow older. Our presentation will discuss these ethical issues as they related to current public health policies about cord blood collection and potential strategies for improving bank policies and educational practices to better address the ethical, legal, and social implications of using these samples.