Skip to main content

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

Completed

This public workshop examined the ethical, legal, social, and policy issues associated with the access to, use, and storage of dried blood spot samples from newborn screening tests. The workshop featured invited presentations and discussions to rigorously examine the benefits and risks associated with this topic. The goal of the workshop was to illustrate the important issues surrounding newborn screening sample collection and handling in order to help advance discussions among policymakers and the broader public.

Description

An ad hoc committee will plan and conduct a public workshop that will examine the ethical, legal, social, and policy issues associated with the access to, use and storage of dried blood spot samples from newborn screening tests. An array of stakeholder perspectives, e.g. parents/guardians, providers, and policy makers, will be included in this activity. The workshop will feature invited presentations and discussions to rigorously examine the benefits and risks associated with this topic. The goal of the workshop will be to illustrate the important issues surrounding newborn screening sample collection and handling in order to help advance discussions among policymakers and the broader public. An individually-authored summary of the workshop will be prepared by a designated rapporteur in accordance with institutional policy and procedures.

Contributors

Sponsors

Department of Health and Human Services

Private: For Profit

Private: Non Profit

Staff

Lyla Hernandez

Lead

Subscribe to Email from the National Academies
Keep up with all of the activities, publications, and events by subscribing to free updates by email.