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

摘要

Residual newborn screening samples represent a significant, though largely untapped, resource that could improve the health and welfare of the public, said Wylie Burke, if these samples could be used for translational research. However, there are important ethical, legal, and social issues surrounding such use which must be addressed. As biological research uncovers new links between genetic variants and disease susceptibilities these issues will only become more pressing. On May 24, 2010, the Roundtable on Translating Genomic-Based Research for Health held a workshop to examine the challenges and opportunities in using residual newborn screening samples for translational research. The workshop examined such questions as: What are the benefits of making residual newborn screening samples available for research; How can the privacy and rights of individuals be protected while allowing access to residual newborn screening samples; How can these samples be made available for other uses without compromising the main function of the newborn screening program.