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Updated: Feb 6, 2026
07:39
How to Obtain Reliable Visual Event-related Potentials in Newborns
Published on: October 24, 2019
6.8K
Including ELSI research questions in newborn screening pilot studies
Aaron J Goldenberg1, Michele Lloyd-Puryear2, Jeffrey P Brosco3
1Department of Bioethics, Center for Genetic Research Ethics and Law, Case Western Reserve University, Cleveland, Ohio, USA. ajg10@case.edu.
Summary
Integrating ethical, legal, and social implications (ELSI) into newborn screening (NBS) pilot studies is crucial. This helps maximize benefits and mitigate potential harms for newborns and families.
Area of Science:
- Medical Ethics
- Public Health Policy
- Genetics
Background:
- Newborn screening (NBS) pilot studies assess benefits and harms of adding new conditions.
- Current NBS evidence reviews have limited consideration of ethical, legal, and social implications (ELSI).
Purpose of the Study:
- To outline key ELSI issues relevant to NBS policy and practices.
- To guide researchers in integrating ELSI considerations into NBS pilot studies.
Main Methods:
- Facilitated professional and public discussions with NBS stakeholders.
- Engaged stakeholders through the Bioethics and Legal Workgroup of the Newborn Screening Translational Research Network.
Main Results:
- Identified key ELSI questions regarding types of results parents receive from NBS.
- Identified key ELSI questions concerning the initiation and implementation of NBS for new conditions.
Conclusions:
- Integrating ELSI into pilot studies enhances understanding of screening impacts on newborns and families.
- This integration aids in making informed policy decisions to maximize benefits and minimize negative implications of NBS.
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