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.
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Workshop
ยท2010
Newborn screening samples are used to test more than 4 million infants each year for life-threatening diseases that are treatable if found at birth. These specimens also represent a potentially invaluable resource for public health and biomedical research. The IOM held a workshop to examine issues s...
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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
Major units and sub-units
Center for Health, People, and Places
Lead
Institute of Medicine
Lead
Board on Health Sciences Policy
Lead
Biomedical and Health Sciences Program Area
Lead