Neonatal Issues

Newborn Screening Act of 2004Newborn Screening Act of 2004

The state shall institutionalize a newborn screening

program that is comprehensive, integrative

and sustainable.

Objectives• health practitioners are aware of the

advantages of newborn screening and of their respective responsibilities in offering newborns the opportunity to undergo newborn screening

• To ensure that parents recognize their responsibility in promoting their child’s right to health and full development

Newborn Screening Act of 2004Newborn Screening Act of 2004

ProvisionsProvisions

• Health care providers should inform the parents or guardian of the nature and benefits of newborn screening prior to delivery

• Screening must be done after 24 hours but not later than 3 days after delivery

• Patients that need to be placed in the ICU: before 7 years of age

ProcedureProcedure• Blood sample: at

least 24 hours after delivery

• Obtained by pricking the baby’s heel (Guthrie spot)

• Dried on a special paper

• Sent to the Newborn Screening Program for testing

ImportanceImportance

• Metabolic disorders – Phenylketonuria, galactosemia

• Hormonal disorders– Congenital adrenal hyperplasia, hypothyroidism

• Genetic disorders– Cystic fibrosis, Duchenne muscle dystrophy

• Transplacental infections– HIV, congenital toxoplasmosis

PrinciplesPrinciples

1. Identification of the genetic condition must provide a clear benefit to the child

2. a system must be in place to confirm the diagnosis

3. treatment and follow-up must be available for newborns affected with the condition

Genetic Manipulation

• Altering human genetic patrimony aimed to cure illness or improve future quality of life with illness caused by genetic or chromosomal anomalies

-Bioethics for Students

•May be ethical provided that they respect the embryo’s life & integrity and do not involve disproportionate risks

3 different ways

• Splicing into human cells a healthy gene to displace a defective gene

• By administering pharamaceuticals containing altered cells

• By stifling harmful genes by interfering with their protein production

The efforts to eliminate defective genes through splicing or by limiting the activity of defective genes are ethically acceptable:

• in the sense that they resemble the effort to use pharmaceuticals to sustain or improve health

Stem cells:• offer the possibility of renewable sources of replacement cells and tissue to treat illnesses• the main issue arises from the SOURCE of the cell

most are from aborted fetuses or frozen fetuses stored for future use destruction to human beings

Solution = stem cells from adults• more adapted to overcoming rejection

in conclusion, genetic engineering is ethically acceptable provided that it is properly designed to protect human dignity and does not use as a source of stem cell embryonic material from human fetuses.

• However, genetic manipulation that select sex or other predetermined qualities (gene enhancement) which change the genotype of the individual to improve a baby violates:– Stewardship– Non maleficence– Respect for human dignity

-Bioethics for Students

Stewardship

• Any manipulation should enhance not diminish humanness

• Efforts to go beyond nature are wrong– Willfulness over giftedness (choose how the child

should be rather than acknowledge them as gifts as they are)

– Dominion over reverence (change accdg. to our desires are rather than accept as they are)

-Bioethics for Students

Stewardship

• The right of parents to “beget” children instead to “design” them as well as to raise them with accepting and transforming love must be respected.

-Bioethics for Students

Non-Maleficence

• The state of art is still with uncertainties and imperfections with yet unknown long term medical hazards.

• Known genetic characteristics may lead to discrimination.

-Bioethics for Students

Respect for human dignity

• The fetus is objectified as something to be altered as desired.

• Financial gain or patents might be obtained from human genome in its natural state.

-Bioethics for Students

ETHICAL ISSUES

• The Value of Human Life• Best Interest• Deliberate action to end life

Critical Care Decisions in Fetal and Neonatal Medicine

Ethical Issues

• The Value of Human Life– SANCTITY OF LIFE

• taking human life is categorically wrong and it is never permissible not to strive to preserve the life of a baby

• all humans are of equal intrinsic value and should be treated with the same respect

• under some circumstances preserving the life of a baby can only lead to an ‘intolerable’ existence (extreme level of suffering or impairment which is either present may develop in the future)

Ethical Issues

Ethical Issues

• Best Interest– the best interests of a baby must be a central

consideration in determining whether and how to treat him or her

– interests can be understood in terms of the factors that affect a person’s quality of life

• constitutive elements of wellbeing - a person’s wellbeing prospers or declines as their interests grow or wane

– a person benefits from having their interests promoted and suffers from having their interests neglected

Ethical Issues

Ethical Issues

• Deliberate action to end life– Taking intentional measures to end the life of a

newborn baby is commonly regarded as a violation of the duty to protect the life of the patient

– This applies even when that baby’s condition is intolerable, with no prospect of survival or improvement

Ethical Issues

What makes a Newborn a Person?

Three Approaches• Absolutist• Subjectivist• Procedural Compromise

Absolutist

– All newborns are persons– Their personhood is merely an extension of the

personhood possessed earlier by fetuses– Like all other persons, they have the moral right to

receive everything to sustain life and not be prematurely allowed to die

Subjectivist

– Moral characteristics define personhood– According to Engelhardt, “ fetuses and infants

should be viewed as human nonpersons because they lack the necessary and sufficient condition for being persons”

– According to Kant, “persons can be defined in terms of : self-consciousness, rationality and the possession of moral sense

– Infants lack these, so they lack the rights of person, which include the right not to be killed or prematurely allowed to die

Procedural Compromise– Newborns as potential persons– Infants will subsequently become person and they

will acquire full moral status– Grant parents and physicians the right to make

withholding or withdrawal decisions jointly, in limited contexts and under limited circumstances

– Infants have the right not to be killed, allowed to die, or significantly, harmed, because they will naturally become actual persons

Case A

• Baby A was born prematurely, at 25 weeks gestational age, to a 21 year old unwed mother who had taken multiple abortifacients. At birth, the baby was limp, with no spontaneous respiration, poor cardiac activity and no response to stimuli

• What should be done?

Case A

• What happened to Baby A?– Procedural Compromise– Newborns as potential persons– Physicians: manual respiration, antibiotics and

hydration– Parent: requested that the physician to do

whatever possible despite her inability to pay the expenses

– Baby A went into cardiac arrest after 48 hours and died

Analysis

• How can this be ethical?– The received care and respect due to a human

being (a warm environment, manual ventilation, hydration and antibiotics)

– This treatment is not overly aggressive but nature was allowed to take its course

CASE B

Is duodenal atresia an opportunity for a mongoloid child to die young or is it merely a surgical emergency which should be dealt with like any other surgical problem?

DUODENAL ATRESIADUODENAL ATRESIA

• Complete obstruction of the duodedum which takes the form of an imperforate mucosal diaphragm or a string-like segment of bowel connecting intact proximal and distal intestine.

Christian PrinciplesChristian Principles

• Inviolability of life• Stewardship• Nonmaleficence• Beneficence• Justice

Inviolability of lifeInviolability of life

All human life from the moment of conception and through all the subsequent , is sacred.It is a gift of GOD and the fruit of love.

The principle recognizes that death is a natural end of life and biological life is not the highest

value.

StewardshipStewardship

Man has dominion over God’s creations: himself, other creatures and environment.

Man must take care and cultivate creatures within the creature’s innate nature and

teleology and within man’s knowledge and understanding.

Nonmaleficence Nonmaleficence

One should not do and risk harm

A healthcare giver should do no harm. Harm are providing incompetent care, disrespecting

dignity etc.

BeneficenceBeneficence

One should prevent or remove harm or risk of harm, do good, provide a benefit.

One condition that require one to perform a beneficent act is:

THE ACTION IS NEEDED AND LIKELY TO SUCCEED

JusticeJustice

Justice is both a principle and a virtue relating to the rightness on people’s interactions and

relationships.

One should give one another what is due.