Ethical Aspects Concerning Termination of Pregnancy Following Prenatal Diagnosis.

Background.

1. Diversification and accuracy of investigational methods applied to prenatal diagnosis have

considerably progressed during the past decade, leading to identify before birth an increasing
number of ill conditions known to severely affect the neonate. These methods include Pre
implantation Genetic Diagnosis (PGD), foetal DNA screening in maternal blood, chorionic villous
sampling, serum biochemical screening tests for Down’s syndrome or neural tube defect,
amniocentesis, cordocentesis. Diagnostic tools include molecular biology, such as Polymerase
Chain Reaction ( PCR ), molecular genetics, Fluorescence In Situ Hybridisation ( FISH ) for rapid
chromosomal defects detection, chromosomal micro satellite analysis, high definition foetal
imaging with ultrasound, Doppler, MRI, helicoid scanner or foetoscopy.

2. In countries where these techniques are available, the main purpose of prenatal diagnosis is to
inform parents of the presence of congenital diseases which may or may not lead to pre or post
natal therapy or may lead to termination of pregnancy. Clearly PGD may avoid more difficult
choices and, as appropriate, should be offered as an option.

3. Delivering and raising a severely malformed baby may create physical, mental and social harm to
the parents and their other children. Some parents may choose to be informed to prepare for this
burden. Others may find the burden will cause too great a harm. Denying parents the possibility to
avoid the afflicting burden of a severely compromised child may be considered as unethical.

4. Cultural, religious or personal beliefs may compel women and couples to oppose prenatal therapy
or refuse medical abortion. For instance Jehovah’s witness may deny intra uterine blood
transfusion for their anaemic foetus. Similarly, strict religious obedience may allow termination of
pregnancy only for reasons of maternal life threatening conditions. In addition invasive foetal
investigations carry the risk of miscarriage which may be unacceptable to the pregnant woman or
couple.

5. Legal regulations on medical termination of pregnancy for foetal disease, if enacted, differ widely
among countries. Some countries legally ban any termination of pregnancy, whatever the term of
pregnancy and whatever the medical indication for abortion. Other countries legalize medical
abortion up to the limit of “foetal viability”, usually 24 weeks, others accept termination of
pregnancy for foetal disease up to full term.

6. Medical abortion practiced at mid term and later has the potential of leading to the birth of a
severely sick or malformed but live born neonate. Provisions that ensure a still birth are usually
practiced for foetuses undergoing a medical abortion beyond 22 weeks.

7. In some countries medical termination of pregnancy may be legally authorized only for a foetal
disease which is of particular severity, incompatible with a normal life. There is no medical
definition for the threshold of severity of a foetal disease nor is there a social definition of a
normal life for a neonate. Acceptability of a severely compromised life is highly dependant on the
parent’s capacity to cope with their child’s condition.

8. Most of the time termination of pregnancy is accepted for a proven foetal disease, i.e. irreparable
congenital heart disease, gross brain malformation, which will later be eventually confirmed at
autopsy. However, in some instances a medical abortion may be decided only because of a high
risk, but not a certitude, of handicap or mental retardation, i.e. retinoid ingestion early in
pregnancy, corpus callosum agenesis. In addition, chromosomal anomalies discovered at
 amniocentesis or brain malformations evidenced at routine ultrasound screening, and confirmed
by MRI, may remain of unknown clinical consequence, and incite parents to request a termination
of pregnancy. Due to the potential complexity of their indications, no normative list of diseases
deemed justifiable of medical abortion have been established, leaving the decision to each
individual case.

9. In most countries where termination of pregnancy for foetal disease is accepted, prenatal diagnosis
is dedicated to specialized multidisciplinary centres, including obstetricians, paediatricians,
geneticists, paediatric surgeons, pathologists, psychologists…When appropriate, medical
termination of pregnancy is proposed, but never imposed to couples. Couples are entitled to be
fully informed of the condition of their foetus. The revelation of a foetal anomaly, whatever its
severity, is always appalling for parents who not only need technical advice, but above all full
psychological and affective support. It is usually recommended that the stillborn baby be
presented to its parents in order to optimally initiate the mourning and healing process.

10. Very premature neonates, as well as foetuses of the same gestational age, anatomically display
nerve receptors to pain. Premature babies express reaction to pain and great attention is paid to
prevent or alleviate their suffering by appropriate precautions or medications. It is accepted that
foetuses experience the same level of pain and that they respond to, and therefore are entitled to
receive, the same type of medications. In addition whenever parents opt to maintain pregnancy for
their severely affected or malformed foetus, all appropriate care, including pain relieving
medications, is granted to the neonate as long as necessary.

Recommendations.

1. Since it may hurt personal, cultural or religious beliefs, no woman, beyond the practice of routine
ultrasound screening, must be engaged in the process of prenatal diagnosis without being fully
informed off its aims, eventually a termination of pregnancy, and its potential hazards of
miscarriage.

2. In countries where it is an accepted medical practice, whenever a severe untreatable foetal disease
or malformation, incompatible with a normal life, is diagnosed by prenatal diagnosis, termination
of pregnancy must be offered to the parents. However women and couples must never be
compelled to perform a medical abortion, whatever the severity of the foetal handicap, against
their personal, cultural or religious beliefs. Parents must be fully informed of the condition of their
foetus. Physician must not impose their personal preference or beliefs nor influence the decision of
parents brutally placed because of the disease of their foetus, in a situation of high vulnerability.

3. Prenatal diagnosis and decisions of terminating pregnancy must be restricted to specialized,

licensed, multidisciplinary centres subjected to regular quality controls. Parents seeking prenatal
diagnosis must not only receive technical advice but also benefit from full psychological support.

4. Termination of pregnancy following prenatal diagnosis must not be presented as an abortion but as
a pharmacologically induced premature delivery, with full maternal pain relief and professional
birth attendance, indicated only because the foetus, fully worthy of compassion, is affected by a
severe untreatable disease or malformation.

5. When termination of pregnancy beyond 22 weeks is legal most women and parents would prefer
to deliver a stillborn in the circumstance of severe congenital malformations. Offering counselling
about the options designed to insure the delivery of a stillbirth is important.

6. Termination of pregnancy following prenatal diagnosis after 22 weeks, must be preceded by a

foeticide starting with the injection into the foetal circulation of anaesthetics and anti pain
medication. In order to better initiate the mourning process, parents must be encouraged, if they
feel strong enough, to contemplate their still born baby after birth. Would they accept the practice
 of an autopsy, they also must be properly advised about its benefit in view of a better counselling
for a future pregnancy. The future child must never be presented as a substitute in replacement of
the deceased foetus. Options for burial of the foetus must be offered to the parents according to
their beliefs.

7. If after a prenatal diagnosis parents opt to maintain pregnancy, appropriate care must be offered to
their sick or malformed neonate.

Lyon, June 2007