Report

Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research - Workshop Summary

Released:: September 8, 2010
Type:: Workshop Summary
Topics:: Biomedical and Health Research, Public Health
Activity:: Roundtable on Translating Genomic-Based Research for Health
Board:: Board on Health Sciences Policy

Note: Workshop Summaries contain the opinion of the presenters, but do NOT reflect the conclusions of the IOM. Learn more about the differences between Workshop Summaries and Consensus Reports.

Newborn screening programs test blood samples from more than 4 million infants each year for life-threatening disorders, such as phenylketonuria and sickle-cell disease, that are treatable if identified at birth. The blood that remains after screening can be an invaluable resource for public health and biomedical research and has been used previously to study childhood leukemia, the prevalence of HIV infection, and exposure to environmental toxins. However, recent legal challenges have brought to light that most parents are unaware that samples can be stored for years afterward and that they can be used for purposes other than screening.

On May 24, 2010, the IOM held a workshop to examine the issues surrounding the use of newborn screening samples for translational research, including autonomy, confidentiality, privacy, informed consent, and consent to future use of samples originally taken for a different purpose. Participants discussed the benefits of making samples available for research; ways to ensure the privacy of individuals while allowing scientists to make use of samples; and strategies for making samples available for additional uses without compromising the main function of the newborn screening program. This document summarizes the workshop.

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