Newborn Baby Screening for Rare Disease: Children’s Best Interest and the Parental Right of Decision

Newborn Baby Screening for Rare Disease: Children’s Best Interest and the Parental Right of Decision

 

Title
Newborn Baby Screening for Rare Disease: Children’s Best Interest and the Parental Right of Decision
Author
Chao-Chu Liu
Keywords
newborn baby screening, rare disease, tandem mass spectrometery, medical decision right, children’s best benefit, screening principle, informed consent
Abstract
In the wonderful course of pregnancy, baby’s health is each parent’s greatest
hope. More than 30,000 genes are passed down from one generation to another by
the replication of DNA in the human body. If there are abnormal genes occurred or
copied in the course of replication, it may bring defective genes to children and
cause genetic rare disease. Since July 1st., 2001, the National Health Administrationof
the Executive Yuan proactively promotes “the second generation’s screening
for newborn baby”, which analyzes various metabolism in human body through
Tandem Mass Spectrometery. With only one drop of blood, this test can detect as
many as 26 different kinds of metabolic disorder. Because the tested party is newborn
babies, their parents’ prior consent is indispensable for this screening. Do parents
have the right to agree such screening?
This article will focus on exploring whether the benefit of the screening could
meet the cost and whether medical treatment according to the screening outcome
would be effective so as to assess the parents’ right of prior consent and its proper
limit. Moreover, rare disease has genetic and long-term characters. Related authority
and non-government organization can play an important role in offering various professional knowledge to patients and their family through lecture, group interaction
and practice to improve their care skill and life quality.
Abstract Article

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