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.
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.
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