austraLasia 759
SALESIAN BIOETHICIST ADDRESSES DOCTORS, LAWYERS,
PARENTS ON RISK AND CHILDREN
HOBART: 26th November -- In a key
paper delivered last week at the University of Tasmania, Salesian priest Dr.
Norman Ford, addressed participants at the 8th Annual Conference of the
Australian Institute of Health, Law and Ethics on the question of 'Risks and
Ethics from Conception to Birth'. Dr. Ford, founding director of the
Melbourne-based Caroline Chisholm Centre for Health Ethics, is an
internationally recognised bioethicist who has distinguished himself for
his involvement in medico-ethical issues pertaining to the conception,
fetal and birth stage of human life and the responsible defense of human
life. On this occasion he outlined what constitutes a responsible approach
to risk-taking for intending parents who know they are disease carriers, for
pregnant mothers concerned about the risks of prenatal screening and diagnosis,
and for doctors who must objectively weigh the risks of fetal surgery or
treatment of surviving infants with disabilities.
"The responsible taking of
risks is an inevitable part of parents' lives", Ford said, explaining that
subjective assessment of risk can at times be much higher than is
objectively warranted, due to such factors as media emphasis on disability
or even a medical model of pregnancy which focuses on abnormality.
Epidemiological studies suggest the risk factor for major abnormalities at birth
is as low as 2%. But he pointed out that intending parents who know they
carry faulty genes have to make responsible decisions. For diseases where
the carrier is not affected, like Cystic Fibrosis, if both partners are
carriers, there is 25% chance of the offspring being affected. If only one
is a carrier, none of their children will be affected, though there is a 50%
chance of their being carriers. In the case of those carrying genes for a
serious disease where the carrier is also affected, called a Dominant disease in
the jargon, (e.g. Huntington's Disesase) the risk is much higher: 1 in 2
offspring are likely to be affected.
Father Ford stressed that the issue, for
those in committed relationships, is one of assuming responsibility for having
children who may be affected. And where such a child exists it is never a
case of it being better 'to be' or 'not to be'. All children are of
inestimable value, but a couple ought not risk conceiving a child with a
dominant disease unless also prepared to raise the children with loving
care. Couples should always be informed of the 1 in 2 risk, usual age of
onset and likely degree of suffering for such a child.
Doctors also have to
assume serious responsibilities, especially with regard to fetal surgery
and the treatment of survivors with disabilities. In general, Ford,
said, fetal surgery should be regarded as extraordinary and he admitted that
surgeons need the wisdom of Solomon when weighing risks of intervention against
those of non-intervention. A difficult area is that of newborns when
parents request aggressive treatment to save a child. This has to be
weighed against a probable prolonging of a distressing dying process. On
the other hand, where reasonable doubts exist on both sides, parents are the
child's natural trustees and may assume the greater responsibility for decision
regarding treatment options.
Other speakers dealt with risk in research, risk
in genetics. The major address was on the human genome: lessons for life,
love and the law. Father Ford's contribution came under the heading of
risk and children.
_______________
'austraLAsia' is an email news service for the Salesian Family of
Asia-Pacific
