Int J Gynecol Obstet, 1992, 39: l-2 International Federation of Gynecology and Obstetrics
Editorial Ethical aspects of termination of pregnancy following prenatal diagnosis
Pd~*M8kdlU~OO
Department of Obstetrics and GynaecologY University of Glasgow Member, FIG0 Committee for the Study of Ethical Aspects of Human Reproduction
Rotaror Peter MaeN8ugIltoo Dmm Department of Child Health University of Bristol Member, FIG0 Committee for the Study of Ethical Aspects of Human Reproduction
Prenatal diagnosis provides information on both the normal and the pathological characteristics of the fetus. Increasingly, prenatal screening will confront women in countries where termination is permissible, with the choice between abortion and continuation of the pregnancy. Most parents do not wish to bring suffering into the world and medical advances have contributed to the expectation that at least physical suffering can be prevented. When prenatal diagnosis shows that there is a serious abnormality which will occur early and result in a life of suffering, many would choose termination of pregnancy. At the other end of the scale, some parents, either on religious grounds or from conscientious objection, may feel that the only permissible justification for termination is risk to the life of the mother. A similar range of attitudes may be found among their medical advisors. Women who agree to prenatal screening experience considerable stress and the pressures, dilemmas and anxieties should be recognized. These are likely to become more severe as prenatal screening expands, due to more and more abnormalities becoming capable of antenatal detection. Individuals must have the choice to participate or decline from participation in screening programs and the choice must be based on appropriate information. It will be particularly important to monitor the effect of screening, as it expands, on the women and their families. Prenatal screening will eventually be capable of detecting thousands of single gene defects as well as providing data of aesthetic concern, such a sex, hair color and body build. As human genome mapping proceeds, information will become available in early pregnancy, not only of defects and diseases present at birth, but also of others of late onset in adult life. This new knowledge will give rise to very complex choices about the future quality of life of an individual and whether that life is worth living; and decisions will need to be made without the possibility of consulting the individual involved. Such decisions raise serious ethical concerns, especially when selective abortion is considered for trivial or only moderately serious genetic indications, or for indications that will result in late onset disease. A good example would be Turner’s syndrome, which results in tnt JournalGynecol Obstet 39
2
Editorial
shortness of height, infertility and, sometimes, an unusual appearance which may make it difficult for the individual to lead a normal life. However, life expectancy is normal and, with the aid of IVF and hormonal treatment, some women with this condition have had babies. Yet, while the severity of the abnormality may not be considered great, there may be a natural parental desire for a ‘perfect baby’. The ethical problem involves the parent’s conception of the child’s future quality of life. Some parents may consider that any ‘abnormal child’ is unacceptable and hence request termination of pregnancy. But would this be ethical? Is there such a thing as a ‘perfect baby’ and to what extent do parents have the right to expect one? Another ethical dilemma is provided by the anticipated possible onset of polycystic kidney disease in adult life. This may or may not arise but, when it does, may result in progressive kidney failure. Thus, this condition is not only of late onset but may be treatable by dialysis or renal transplantation. Huntington’s chorea, another example of late onset disease, is of more serious import, since the condition is more serious and is also untreatable. While it may be argued that termination might be the usual choice for this condition, as no parent would wish their child to suffer from this disease in later life, an alternative view might be that a normal life of 30-50 years is potentially a full one and that much may be achieved by the individual before the onset of symptoms. The disease free years might give experience and opportunities much more satisfactory than, for example, those of old age with its increasing disability. Although the suffering incurred as Huntington’s chorea progresses is severe, it may be no worse than the senile dementias that often afflict old people. Thus, the decision in favor of termination is by no means clear cut. What level of fulfilment is open to those who may be victims of mild or late onset disease? Parents want perfect babies, but how does one measure perfection? And how, then, should these difficulties be managed? Women who consent to the use of prenatal diagnostic procedures should be asked to state in advance the information they wish to be withheld from them during the remainder of the pregnancy. Such information might concern the sex of the fetus or some fetal disease that did not justify termination of pregnancy as an option. However, the attitude of the parents, particularly the woman, after counselling is of major importance in reaching a decision. It would be unethical for anyone to bring pressure to bear on the couple with a view to their accepting a particular option. Termination, however, should be strongly discouraged when the disorder is cosmetic, minor, treatable or is unlikely to significantly impair the future quality of life. Professor Sir Malcolm Macnaugh ton Professor Peter MacNaughton Dunn Int Journal Gynecol Obstet 39
Editorial Ethical aspects of termination of pregnancy following prenatal diagnosis
Pd~*M8kdlU~OO
Department of Obstetrics and GynaecologY University of Glasgow Member, FIG0 Committee for the Study of Ethical Aspects of Human Reproduction
Rotaror Peter MaeN8ugIltoo Dmm Department of Child Health University of Bristol Member, FIG0 Committee for the Study of Ethical Aspects of Human Reproduction
Prenatal diagnosis provides information on both the normal and the pathological characteristics of the fetus. Increasingly, prenatal screening will confront women in countries where termination is permissible, with the choice between abortion and continuation of the pregnancy. Most parents do not wish to bring suffering into the world and medical advances have contributed to the expectation that at least physical suffering can be prevented. When prenatal diagnosis shows that there is a serious abnormality which will occur early and result in a life of suffering, many would choose termination of pregnancy. At the other end of the scale, some parents, either on religious grounds or from conscientious objection, may feel that the only permissible justification for termination is risk to the life of the mother. A similar range of attitudes may be found among their medical advisors. Women who agree to prenatal screening experience considerable stress and the pressures, dilemmas and anxieties should be recognized. These are likely to become more severe as prenatal screening expands, due to more and more abnormalities becoming capable of antenatal detection. Individuals must have the choice to participate or decline from participation in screening programs and the choice must be based on appropriate information. It will be particularly important to monitor the effect of screening, as it expands, on the women and their families. Prenatal screening will eventually be capable of detecting thousands of single gene defects as well as providing data of aesthetic concern, such a sex, hair color and body build. As human genome mapping proceeds, information will become available in early pregnancy, not only of defects and diseases present at birth, but also of others of late onset in adult life. This new knowledge will give rise to very complex choices about the future quality of life of an individual and whether that life is worth living; and decisions will need to be made without the possibility of consulting the individual involved. Such decisions raise serious ethical concerns, especially when selective abortion is considered for trivial or only moderately serious genetic indications, or for indications that will result in late onset disease. A good example would be Turner’s syndrome, which results in tnt JournalGynecol Obstet 39
2
Editorial
shortness of height, infertility and, sometimes, an unusual appearance which may make it difficult for the individual to lead a normal life. However, life expectancy is normal and, with the aid of IVF and hormonal treatment, some women with this condition have had babies. Yet, while the severity of the abnormality may not be considered great, there may be a natural parental desire for a ‘perfect baby’. The ethical problem involves the parent’s conception of the child’s future quality of life. Some parents may consider that any ‘abnormal child’ is unacceptable and hence request termination of pregnancy. But would this be ethical? Is there such a thing as a ‘perfect baby’ and to what extent do parents have the right to expect one? Another ethical dilemma is provided by the anticipated possible onset of polycystic kidney disease in adult life. This may or may not arise but, when it does, may result in progressive kidney failure. Thus, this condition is not only of late onset but may be treatable by dialysis or renal transplantation. Huntington’s chorea, another example of late onset disease, is of more serious import, since the condition is more serious and is also untreatable. While it may be argued that termination might be the usual choice for this condition, as no parent would wish their child to suffer from this disease in later life, an alternative view might be that a normal life of 30-50 years is potentially a full one and that much may be achieved by the individual before the onset of symptoms. The disease free years might give experience and opportunities much more satisfactory than, for example, those of old age with its increasing disability. Although the suffering incurred as Huntington’s chorea progresses is severe, it may be no worse than the senile dementias that often afflict old people. Thus, the decision in favor of termination is by no means clear cut. What level of fulfilment is open to those who may be victims of mild or late onset disease? Parents want perfect babies, but how does one measure perfection? And how, then, should these difficulties be managed? Women who consent to the use of prenatal diagnostic procedures should be asked to state in advance the information they wish to be withheld from them during the remainder of the pregnancy. Such information might concern the sex of the fetus or some fetal disease that did not justify termination of pregnancy as an option. However, the attitude of the parents, particularly the woman, after counselling is of major importance in reaching a decision. It would be unethical for anyone to bring pressure to bear on the couple with a view to their accepting a particular option. Termination, however, should be strongly discouraged when the disorder is cosmetic, minor, treatable or is unlikely to significantly impair the future quality of life. Professor Sir Malcolm Macnaugh ton Professor Peter MacNaughton Dunn Int Journal Gynecol Obstet 39
