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How to Obtain Reliable Visual Event-related Potentials in Newborns
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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.

Genetics in Medicine : Official Journal of the American College of Medical Genetics
|August 14, 2018
PubMed
Summary
This summary is machine-generated.

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.

Keywords:
ELSIEthicsNewborn screeningPilot studiesResearch

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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.