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Related Concept Videos

Genetic Screens02:46

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Genetic screens are tools used to identify genes and mutations responsible for phenotypes of interest. Genetic screens help identify individuals or a group of people at risk of developing  genetic diseases and help them with early intervention, targeted therapy, and reproductive options.
Forward genetic screens
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In healthcare, informed consent is a crucial process that involves thoroughly communicating medical treatment options to patients, including benefits, risks, potential side effects, and alternatives. This process enables patients to make well-informed decisions about their care, ensuring they understand the implications of their choices before consenting to or refusing treatment.
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Teratogenicity01:07

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Related Experiment Video

Updated: May 30, 2026

Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
19:15

Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale

Published on: August 25, 2014

Parental views on informed consent for expanded newborn screening.

Louise Moody1, Kubra Choudhry

  • 1Department of Industrial Design, Coventry University, UK. L.moody@coventry.ac.uk

Health Expectations : an International Journal of Public Participation in Health Care and Health Policy
|August 16, 2011
PubMed
Summary

Parents desire clear information and decision-making power for expanded newborn screening. They believe current expanded screening doesn't require formal written consent, suggesting flexible ethical review processes.

Keywords:
expanded newborn screeningheel-prick testinformed consent

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Published on: October 4, 2015

Area of Science:

  • Medical Ethics
  • Public Health
  • Genetics

Background:

  • Universal newborn screening programs are expanding to detect rare inherited conditions.
  • Ethical considerations, including informed consent and parental communication, are crucial for these service developments.
  • Parental perspectives are vital for shaping flexible protocols aligned with public perception.

Purpose of the Study:

  • To explore UK parents' and future parents' views on expanded newborn screening.
  • To assess parental attitudes towards information provision and consent processes for expanded screening.

Main Methods:

  • A mixed-methods approach was employed.
  • Focus groups (n=29) and a web-survey (n=142) were conducted with parents and future parents.

Main Results:

  • Parents prioritize guaranteed information and clear decision-making autonomy.
  • Participants did not find the difference between existing and expanded screening significant enough to mandate formal written consent.
  • A need for more flexible ethical review processes regarding information and consent in newborn screening was identified.

Conclusions:

  • Parents expect transparency and control over their healthcare decisions in newborn screening.
  • Current ethical frameworks may need adaptation to accommodate public views on expanded screening programs.
  • Flexible approaches to consent and information are recommended for future newborn screening developments.