270622 Who's Cutting the Cord? Social and Ethical Implications of Using Publicly Banked Umbilical Cord Blood for Genetic Research

Tuesday, October 30, 2012 : 2:50 PM - 3:10 PM

Aaron Goldenberg, PhD, MPH , Department of Bioethics, Case Western Reserve Universirty, Cleveland, OH
Jessica Berg, JD, MPH , Schools of Law and Medicine, Case Western Reserve University, Cleveland, OH
Sherri Broder, PhD , Department of Bioethics, Case Western Reserve Universirty, Cleveland, OH
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.

Learning Areas:
Ethics, professional and legal requirements
Implementation of health education strategies, interventions and programs
Planning of health education strategies, interventions, and programs
Public health or related laws, regulations, standards, or guidelines
Public health or related research

Learning Objectives:
1. To identify the ethical and social implications of using publicly banked umbilical cord blood for genetic research. 2. To describe the range of policies and practices employed by public cord blood banks around the issues of informed consent and public health research use. 3. To discuss approaches for improving parental education and consent for the research use of publicly banked cord blood.

Keywords: Perinatal Health, Ethics

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have a PhD in Bioethics and a MPH in public health genetics and health education. I have over 10 years of experience working on ethical issues related to public health genomics and the use of stored samples. I am currently the director of a research project related to the ethical and social issues related to public cord blood collection and use.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.