Introduction

Until the last century, the fetus was hidden from view until birth and inaccessible for diagnosis or treatment. The discovery of X-rays in 1895 allowed the first possibility of prenatal diagnosis of fetal problems, including multiple pregnancy (1911), neural-tube defects, Spalding’s sign indicating fetal death (1922), and assessment of fetal maturity from 1935 . The earliest intrauterine treatment in regular use was intraperitoneal transfusion of blood in rhesus disease, first reported in 1963, again using X-ray guidance . In 1958, Ian Donald described the use of ultrasound to examine intra-abdominal masses, including the fetus , and by 1970 fetal polycystic kidney disease had been recognised . Further developments, particularly the introduction of real-time ultrasound in the late 1970s, led to a rapid increase in the number of abnormalities that could be recognised antenatally so that, by the early 1980s, even fetal cardiac abnormalities were being identified. Ultrasound also supported invasive procedures. By 1982, chorionic villus sampling, amniocentesis, and the safe placement of fetoscopes had been described to guide intravenous transfusion .

As a result, the fetus is no longer hidden until birth but potentially a patient, who can be examined, subjected to additional diagnostic investigations, and treated, either by modifying the place, equipment and staff available at delivery or even by intrauterine treatment. This potential brings with it new ethical dilemmas for parents and clinicians.

Ethical principles

Ethics deal with the moral principles governing a person’s behaviour or conduct of an activity. It addresses what our behaviour ought to be and what virtues should be cultivated in our moral lives . A number of approaches may be chosen when considering ethical decisions and behaviour in the use of prenatal ultrasound, including consideration of religious, secular and legal guidance. Most societies are now multicultural so not dependent on a single religious code to provide guidance, although laws will often by influenced by religion. In such a multicultural society, a secular framework is required to allow patients to be treated in accordance with their wishes, within the legal constraints of the country in which they live, even if these conflict with the religious views of the clinician.

Gillon proposed an approach using four principles plus scope as a ‘simple, accessible, and culturally neutral approach to thinking about ethical issues in health care’. These are respect for autonomy, beneficence, non-maleficence and justice. Using these can provide a common set of moral commitments and a shared moral language that help achieve a decision in difficult ethical situations.

Respect for autonomy places a number of duties on the clinician. It requires that the patient be consulted and their informed consent obtained before anything is done to them; it requires their active involvement in decisions; and requires respect and support for their decisions even if these differ from those the clinician would have made. It requires that information is treated confidentially, and places a duty to communicate clearly and effectively so patients are fully informed to enable them to make their choices. Respect for autonomy requires the clinician to recognise that the patients’ values and beliefs will affect their decisions about what is in their best interests. Many of the decisions relating to obstetric ultrasound are complex, especially when fetal anomalies or life-threatening problems are found, yet the patient, in this case the mother, is assumed to be competent to consider the issues and decide the best option for her and her family .

The principle of beneficence requires that we aim to help the patient. Most health interventions, including prenatal ultrasound alone or as part of an invasive procedure, also have the potential to cause harm, and the principle of non-maleficence places the duty to avoid or minimise such harm. These two principles can be summarised as the clinician having the duty to act in the best interests of the patient. The ‘best interests’ should be decided by a careful, unbiased evaluation of the patient, making use of scientific knowledge and clinical experience . The best health interests include avoiding premature death and minimising, curing or managing morbidity, while minimising the harm caused by any interventions or actions. We should seek to achieve the greatest balance of good over harm in the consequences of our behaviour.

The principle of justice requires that fairness is applied when judging between competing claims. This may mean fair distribution of limited resources, respect for people’s rights, or respect for morally acceptable laws . Gillon argues that these principles can be applied by distributing healthcare resources in proportion to the extent of people’s needs for health care; allowing healthcare workers to give priority to the needs of ‘their’ patients; providing equal access to health care; allowing people as much choice as possible in selecting their health care; and maximising the benefit produced by the available resources and respecting the autonomy of the people who provide those resources and thus to limit the cost to taxpayers . These aims may not be simultaneously achievable.

These principles underpin many codes of practice outlining the duties of doctors in relation to their patients. Within the UK, the General Medical Council provides guidance on Good Medical Practice , emphasising the need to respect the autonomy of patients by maintaining personal honesty and integrity, and treating patients as individuals and respecting their dignity and confidentiality. The principles of beneficence and non-maleficence are supported by the requirements to keep professional knowledge and skill up to date and to work within the limits of competence. Many other medical licensing authorities internationally have issued similar guidance.

For this chapter, the scope to be considered is the application of these principles in the use of prenatal ultrasound in its various roles. These include identification of fetal anomalies, assessment of fetal growth, and as an adjunct to invasive testing or therapies. One of the most ethically contentious areas arising from prenatal ultrasound is the provision of termination of pregnancy, particularly in late pregnancy.

Ethical principles

Ethics deal with the moral principles governing a person’s behaviour or conduct of an activity. It addresses what our behaviour ought to be and what virtues should be cultivated in our moral lives . A number of approaches may be chosen when considering ethical decisions and behaviour in the use of prenatal ultrasound, including consideration of religious, secular and legal guidance. Most societies are now multicultural so not dependent on a single religious code to provide guidance, although laws will often by influenced by religion. In such a multicultural society, a secular framework is required to allow patients to be treated in accordance with their wishes, within the legal constraints of the country in which they live, even if these conflict with the religious views of the clinician.

Gillon proposed an approach using four principles plus scope as a ‘simple, accessible, and culturally neutral approach to thinking about ethical issues in health care’. These are respect for autonomy, beneficence, non-maleficence and justice. Using these can provide a common set of moral commitments and a shared moral language that help achieve a decision in difficult ethical situations.

Respect for autonomy places a number of duties on the clinician. It requires that the patient be consulted and their informed consent obtained before anything is done to them; it requires their active involvement in decisions; and requires respect and support for their decisions even if these differ from those the clinician would have made. It requires that information is treated confidentially, and places a duty to communicate clearly and effectively so patients are fully informed to enable them to make their choices. Respect for autonomy requires the clinician to recognise that the patients’ values and beliefs will affect their decisions about what is in their best interests. Many of the decisions relating to obstetric ultrasound are complex, especially when fetal anomalies or life-threatening problems are found, yet the patient, in this case the mother, is assumed to be competent to consider the issues and decide the best option for her and her family .

The principle of beneficence requires that we aim to help the patient. Most health interventions, including prenatal ultrasound alone or as part of an invasive procedure, also have the potential to cause harm, and the principle of non-maleficence places the duty to avoid or minimise such harm. These two principles can be summarised as the clinician having the duty to act in the best interests of the patient. The ‘best interests’ should be decided by a careful, unbiased evaluation of the patient, making use of scientific knowledge and clinical experience . The best health interests include avoiding premature death and minimising, curing or managing morbidity, while minimising the harm caused by any interventions or actions. We should seek to achieve the greatest balance of good over harm in the consequences of our behaviour.

The principle of justice requires that fairness is applied when judging between competing claims. This may mean fair distribution of limited resources, respect for people’s rights, or respect for morally acceptable laws . Gillon argues that these principles can be applied by distributing healthcare resources in proportion to the extent of people’s needs for health care; allowing healthcare workers to give priority to the needs of ‘their’ patients; providing equal access to health care; allowing people as much choice as possible in selecting their health care; and maximising the benefit produced by the available resources and respecting the autonomy of the people who provide those resources and thus to limit the cost to taxpayers . These aims may not be simultaneously achievable.

These principles underpin many codes of practice outlining the duties of doctors in relation to their patients. Within the UK, the General Medical Council provides guidance on Good Medical Practice , emphasising the need to respect the autonomy of patients by maintaining personal honesty and integrity, and treating patients as individuals and respecting their dignity and confidentiality. The principles of beneficence and non-maleficence are supported by the requirements to keep professional knowledge and skill up to date and to work within the limits of competence. Many other medical licensing authorities internationally have issued similar guidance.

For this chapter, the scope to be considered is the application of these principles in the use of prenatal ultrasound in its various roles. These include identification of fetal anomalies, assessment of fetal growth, and as an adjunct to invasive testing or therapies. One of the most ethically contentious areas arising from prenatal ultrasound is the provision of termination of pregnancy, particularly in late pregnancy.

When is the fetus a patient?

Most clinicians have only one patient to consider during a consultation yet, in the practice of obstetric ultrasound, there are potentially two. Usually the mother shares the interests of her fetus but, on occasion, her interests may conflict with those of her baby, and this can cause ethical dilemmas for her clinician. Fundamental to considering and deciding on these issues is the moral status of the fetus, as the autonomy of the mother may need to be balanced against the rights or potential rights of the fetus.

The moral status of the fetus has been debated for centuries, with no consensus achieved and with views ranging across wide extremes. The Catholic Church recognises the moral status of the fetus from the moment of conception, but other religions and cultures take very different views. Both secular and religious communities have a concept of ‘personhood’ separate from simply being alive, with most recognising the onset of personhood as gradual as pregnancy advances. Rimon-Zafarty et al. found that this concept seemed to develop later in an Israeli population compared with others: in their study, only 36% of respondents considered the fetus alive at implantation, with most (71%) considering it alive once a heart beat could be detected. By contrast, it was not until fetal movements were apparent to the mother that most (63%) considered the fetus had ‘personhood’ status. They compared their findings with others from Australia and the USA, and found that the concept of personhood developed later in the Israeli population.

In ancient times, personhood was also deemed to develop at different times. During the Middle Ages ‘quickening’ was considered to be the moment that the fetus developed its own moral status. In earlier societies, personhood was not felt to develop until later in infancy, and it was common for children with deformities or who were otherwise unwanted to be left, like the legendary Romulus and Remus, to die by exposure. A similar view was recently advanced by Giubilini and Minerva , who argued that ‘after birth abortion’ was justified for both babies with severe abnormalities and those who were unwanted by their parents. They argue that personhood does not develop until an individual is capable of attributing some value to their own existence, as before then loss of such an existence cannot represent a loss to the child. As the baby is only a ‘potential person’, the interests of actual people (parents and society) override the interests of those who are ‘merely potential’. Unsurprisingly, their view received considerable critical comment.

In parallel with the spectrum of opinion about the onset of personhood, the legal status of the fetus varies in different countries and states, and the concept of developing personhood with advancing pregnancy is mirrored by laws relating to abortion. In English law, the fetus has no legal status separate from its mother until it is born . Thus, although it might have moral status and claims, it has no legal rights or status in law before birth. Despite this, the fetus has ‘latent rights’ that crystallise upon delivery. Hence, obstetricians and midwives owe it a duty of care and, if an injury occurs before birth due to negligent treatment, the former fetus can now exercise its rights as a person to bring a claim for damages.

Despite its lack of legal status, the fetus retains some protection in English law, as termination of pregnancy remains illegal except within the provisions of the Abortion Act, 1967 as amended by the Human Fertilisation and Embryology Act, 1990. For two of the five provisions under which termination is allowed, the upper gestation is limited to 24 weeks, considered to be the time of viability. Where the pregnancy could cause grave injury or risk to the life of the mother, her interests are considered paramount, and termination can be performed at any gestation. It is also allowable at any gestation for fetal abnormalities where there is ‘substantial risk’ that the child may suffer ‘serious physical or mental handicap’. In Israel, termination is permissible for fetal abnormality at any gestation but with greater restrictions after 24 weeks; in New Zealand, termination is more restricted after 20 weeks and only allowable if there is serious risk to the physical or mental health of the mother, so late termination for fetal anomaly may be carried out to avoid psychological injury; in Germany, no gestational limit exists on termination, but there are similar requirements to demonstrate a risk of psychological harm if a late termination is contemplated; and, in the USA, the law varies from state to state, with many allowing termination only up to the point of ‘viability’, although the legal definition of this varies. Legal restrictions on late termination in other European countries were summarised by Habiba et al. Even where the law is clear, there is little case-law to clarify some of the terms used. Within the UK, for example, the interpretation of ‘substantial risk’ and ‘serious physical or mental handicap’ remain uncertain, and some clinicians have found themselves reported to the Crown Prosecution Service after carrying out a termination at 28 weeks in a fetus with cleft lip and palate, although they were not ultimately prosecuted .

It is also clear that, despite its lack of legal status, both parents and clinicians frequently consider the fetus as a patient, to whom they owe ethical duties of care. This differs from any other branches of medicine, as the clinician may have to consider his or her simultaneous ethical responsibilities to two patients, the mother and the fetus, and may also be a source of conflict. The fetus is incapable of assessing its own best interests so the obligations to it are based on beneficence rather than autonomy , and these obligations are shared by both the mother and clinician.

In most cases, the interests of the mother are in harmony with the fetus, but Chervenak et al. consider the relationship between the mother, fetus and clinician in cases where their interests may not be fully aligned, and highlight a potential for conflict. They consider three ethical models, one where the rights of the fetus are paramount, one where the mother takes full precedence, and a third which they describe as exercising professional responsibility to balance the two.

In the first model, the rights of the fetus systematically override those of the mother. This would prevent termination of pregnancy in any circumstances, even where the life of the mother may be threatened, overriding all her choice in the matter. This is the position taken in Irish law, and this was recently suggested to have contributed to the death of a pregnant mother with a septic abortion .

In the second model, the mother’s autonomy is maintained throughout pregnancy, systematically overriding the rights of the fetus. Taken to its logical extreme, this would allow the mother to opt for termination of pregnancy at any stage and for any reason. It also allows her to refuse intervention, such as caesarean section, even where the life of the fetus is in jeopardy if not managed this way. In the USA and UK, courts have, on occasion, overridden the wishes of the mother and ordered delivery by caesarean against her wishes, but the current position in UK law is that the Court will not override the right of a mother to refuse operative delivery unless she lacks mental capacity to make the decision. The Royal College of Obstetricians and Gynaecologists has summarised the relevant case law and provides guidance in case such conflicts arise .

The third option requires the clinician to exercise his clinical judgement to maximise the benefit to both mother and baby, making use of the principles of beneficence and autonomy. The fetus has no ability for autonomous decisions so only beneficence can be applied, but the mother’s values and beliefs must be respected. McCullough and Chervenak argue that the pregnant mother becomes a patient when she presents for care, so this is easy to define and recognise. The fetus becomes a patient in a more complex fashion. The fetus’ moral status is dependent on its mother, but an important step on its path to independent status is achieving viability, when it can exist separately. Viability is not a fixed point, but will depend on the biological capacity of the fetus, including its gestation and the presence of additional anomalies, and the technological support available. In countries with access to complex neonatal care, viability in a normally formed fetus is usually considered to occur at around 24 weeks of age. A fetus with trisomy 18 or with pulmonary hypoplasia secondary to renal agenesis, however, may never achieve viability, as no technical support can overcome its inherent problems. They contend that the ethical significance of viability is that ‘there are clinical interventions that can reasonably be expected to protect and promote the interests of the fetus’ that can prevent death, reduce suffering or limit or cure disease. Two features inherent in being a patient are (1) the individual presents to a clinician, and (2) it is for the purpose of applying clinical interventions that are reliably expected to promote the interests of that individual. Once the fetus reaches viability, the second condition applies and both the mother and the clinician then have an ethical obligation to promote the wellbeing of the fetus.

The situation is arguably different for the pre-viable fetus. No technological interventions can enable the fetus to survive to achieve independent moral status, so ‘it has no claim on the pregnant woman or any physician to remain in utero ’. Its status as patient can only be conferred by the mother’s autonomous decision to do so and to present the fetus to a clinician. The ethical implication of this is that the mother can choose to confer or withhold the status of patient on her fetus, or having conferred that status, later choose to remove it. McCullough and Chervenak summarise their argument by stating that the fetus is sometimes a patient depending on (1) whether it is viable, which confers a responsibility on the mother to present it for care; or (2) if she confers the status of patient on a pre-viable fetus. This has important implications for the practice of obstetric ultrasound.