Note: This article is based on a talk presented at the annual meeting of the Indian Association of Pediatric Surgeons – AP and TS Chapter, held in Vishakhapatnam on February 1, 2026.

Antenatal diagnosis and management, commonly referred to as fetal medicine, is a rapidly evolving field within medicine. Since the 1950s, technological advancements have led to a remarkable study of fetal problems and treatment strategies. The fetus is now receiving various genetic therapies, surgical interventions, and other medical treatments for many conditions. However, alongside these advancements, numerous ethical and moral questions have arisen, reflecting the complexities of fetal medicine. 

This essay will briefly examine some of the key issues. The first part discusses the evolution of ethics, while the second part explores cultural differences in understanding ethical and moral domains, using the issue of pregnancy termination as an example. The section on cultural differences draws on the remarkable work of Dr. S. N. Balagangadhara of Ghent University in Belgium.  

What Are Ethics?

Ethics, often equated with morals, is a system of principles that delineates notions of right and wrong behaviour towards other humans, animals, plants, and the environment. Interestingly, ethical principles are entirely anthropocentric, reflecting purely a human perspective that prioritizes human rationality and language. As a result, except for adult humans, entities such as the environment, animals, and fetuses lack a voice in ethical discussions, leading humans to make decisions that perhaps serve their own interests rather than the greater good.

Ethics is generally studied under three broad domains. These are:

  1. Normative ethics

  2. Applied ethics.

  3. Metaethics

Normative ethics are guidelines that outline conduct for leading a positive life, representing universal principles applicable across cultures and times. Normative ethics assumes that "moral laws are universalizable." An example is the statement, "It is wrong to harm a child for amusement." This would be a normative ethic true across times and cultures.

There are three factors involved in any action: the agent, the action itself, and its consequences. Depending on the focus, there are three main ideas regarding normative ethics as propagated by various philosophers.  

  • Consequentialism assesses acts based on their beneficial outcomes. Utilitarianism, or the principle of the greatest good for the greatest number, notably embodies this idea. John Stuart Mill and Jeremy Bentham are generally associated with this idea of ethics.

  • Deontology focuses on the agent and the agent's intention behind the act, irrespective of the results. The deontologists would claim that telling the truth and keeping promises are important ethical principles, regardless of the consequences. Immanuel Kant is associated with this idea of ethics.  

  • Virtue ethics centres on the qualities of the act itself, such as courage and compassion, prioritising these qualities over both the agent and the consequences.

Applied ethics is a domain that applies ethical principles to real-life situations in diverse fields, covering topics like abortion, end-of-life decisions, animal treatment, and environmental issues. It includes various branches of ethics, such as medical ethics, professional ethics, business ethics, and so on. 

Metaethics examines the foundational theories that support ethical studies. It questions the fundamental assumptions and concepts involved in the formulation of ethics. Are there any “objective” moral facts in the first place, and how is moral knowledge attainable?

There are other ideas of ethics where God or other factors come into play. The Divine Command Theory looks at God as the source of morality. Contractualists look at the social contract between humans as a source of morality, while Discourse ethics is based on rational reasoning and agrees to multiple perspectives depending on the cultural backgrounds.

Bioethics

Bioethics is a branch of applied ethics that began to develop in the latter half of the twentieth century. It addresses moral questions and issues arising in the life sciences related to human beings, animals, and the environment. Bioethics emerged as a formal discipline in the early 1970s, largely attributed to the contributions of V.R. Potter (Bioethics, the Science of Survival, 1970) and Daniel Callahan (Bioethics as a Discipline, 1973), alongside the establishment of the Kennedy Center for the Study of Human Reproduction and Bioethics. However, the origins of bioethics can be traced back to the German theologian Fritz Jahr, who, in the late 1920s and early 1930s, coined the term "Bio-Ethik" to explore ethical issues pertaining to humans and the environment.

The Nazi Human Experimentation (1942-45) was a shocking chapter of medical experimentation. The documented 15,000 human experiments by the Nazis in concentration camps, mainly on Jews, were devastating and shocking. These included painful amputations without anaesthesia for testing anticoagulants; organ removals for transplantation experiments, again without anaesthesia; hypothermia tests; sterilization via X-rays and drugs; and high-altitude experiments. Such practices, considered unethical even for animals today, prompted the establishment of a code of conduct for biological experiments. Some of the checks created in the aftermath of these revelations were the Nuremberg Code (1947). The Declaration of Helsinki (1964) is a cornerstone ethical document for human medical research, developed by the World Medical Association (WMA).

In the 1890s, Dr. Albert Neisser, famous for his venereal disease research, conducted unethical experiments by injecting syphilis serum from patients into prostitutes without obtaining their informed consent. This reflects a troubling history of controversial experiments, a pattern of behaviour that the United States has also exhibited. The Tuskegee Syphilis Study (1932-1972) stands in the annals of unethical medicine, despite all the codes and checks in place. The Public Health Service (PHS) and the CDC conducted a 40-year observational study involving 400 African American men with syphilis, without obtaining informed consent or providing treatment. The study withheld penicillin and tracked the disease's progression to death and autopsy, resulting in over 100 deaths. A whistleblower exposed the study, triggering public outcry.

Several ethical debates have led to legal interventions in medicine. The Harvard Definition of Brain Death (1968) was the first step towards organ donation. The case of Karen Ann Quinlan (1975) explored issues of prolonged vegetative states. The "Baby Doe Rules" (1982) emerged after the parents of a Down syndrome baby refused surgery for oesophageal atresia—a condition where the food pipe is not formed adequately, resulting in the baby's death. These rules stipulated treatment must be offered unless the infant is terminally ill or treatment is futile. The famous Roe v. Wade (1973) case and the death of an Indian dentist in an Irish hospital will be dealt with later when considering the termination of pregnancy.

The Common Ethical Problems in Fetal Medicine

Fetal medicine and interventions are probing deep into the most inaccessible parts of the fetus and offering various options to the mother and family today. However, their use has given rise to many ethical questions. As technology and interventions advance, the ethical issues grow more complex and difficult. There are many ethical questions, but a few seem pertinent in fetal medicine today.

Most importantly, fetal medicine has changed the pregnancy experience. Pregnancy has almost become a disease, and physiology has been getting converted to pathology since the emergence of antenatal screening in the 1950s. Before, the fetus was assumed to be healthy, unless there was evidence to the contrary. Now, normality has to be proven. The use of invasive techniques carries certain risks for the mother. Nevertheless, it is evident that, on the whole, technology tends to benefit the mother more than the fetus.

Testing primarily benefits pregnant women by enhancing their decision-making regarding reproductive issues. However, it can also diminish their sense of control and lead to the involvement of third parties in private matters. The fetus benefits much less from the actual treatment. A rational-economic perspective dominates today. Preventing disabilities is more financially beneficial than providing care for disabled children. 

Antenatal diagnoses have expanded the definition of "unacceptable abnormality" while simultaneously narrowing the parameters of "acceptable normality". Conditions such as Down syndrome and spina bifida are now perceived as costly, raising concerns about which other conditions might similarly be classified as “unacceptable” should economic circumstances worsen.

Diagnosis of any condition generally leads to treatment, making the patient comfortable, or non-intervention. "Life or no life" is never an option in medicine. However, in fetal medicine, abortions are a very viable option. But such an action is in whose interest? Is it in the interests of the fetus, mother, or society? There is clearly a lack of agency for the fetus in decision-making regarding its future. It is the mother or the family who makes choices. If the rationale is the severe psychological and social stress the mother faces, some ethicists maintain that female feticide and abortion for Down syndrome are morally and ethically on a similar plane.

Antenatal diagnosis and selective abortions have diminished research into treatments for rare genetic diseases, exemplified by Huntington's chorea, a progressive neurodegenerative disorder. The practice of selective abortion lessens incentives to seek cures, resulting in considerable suffering for individuals affected by such disorders and those who lack prenatal medical intervention. The issue with fetal screening combined with selective abortion is that we cannot eradicate the disease without also eliminating the subjects affected by it.

The counseling process and the training of the counselor appear to be crucial in fetal medicine outcomes. However, there may be limited access to specialists in fetal medicine, genetics, pediatric surgery, or other allied specialities. Insufficient knowledge may hinder effective counseling, often leading families to opt for termination as part of a binary decision-making process. Counseling also poses difficulties with late-onset diseases, such as Huntington's disease or genetic disorders characterised by variable expression. Furthermore, the ethics surrounding abortion for treatable genetic conditions, including phenylketonuria (PKU), remain a contentious issue.

So, what does the future hold? The possible directions include gene therapy for genetic disorders, medical treatment for correctable health issues, and surgical correction of structural anomalies. For example, CRISPR is a gene editing tool that is being used in diseases like sickle cell disease, beta-thalassaemia, HIV, cancer, and so on. It is useful for treating rare genetic disorders where individual research is becoming difficult. The prospect of scarless healing in fetal surgery encourages mothers to agree to invasive procedures, despite the associated risks. Nonetheless, the ethical issues surrounding these evolving practices are complex and unresolved.

Down Syndrome and Other Genetic Anomalies

Down syndrome is a prototype genetic anomaly and a target of antenatal screening technologies.  World Down Syndrome Day, observed on 21 March, aims to promote opportunities and inclusion for individuals with Down syndrome (DS). Despite these efforts, the societal integration of these children with variable physical and intellectual disabilities remains difficult. 

Antenatal screening for Down syndrome, a “search and destroy” mode, often leads to pregnancy terminations, exemplified by Iceland's near 100% elimination rate of the condition. On the other hand, what is the perspective of the Down syndrome-affected children about themselves? Disturbingly, a study of 284 children over 12 years with this condition showed that almost all were happy with their lives and families, with 97% liking who they are and 96% satisfied with their appearance. Nevertheless, challenges in making friends can lead to isolation. This situation raises an ethical dilemma: while advocating for inclusion and equality, society simultaneously attempts to prevent the birth of individuals with Down syndrome.

Some ethicists argue that a fetus with Down syndrome shouldn't be terminated. The appropriate action following the diagnosis of genetic conditions with variable expressivity presents a considerable challenge. As more diseases become identifiable through pre-delivery diagnosis, ethical dilemmas are likely to escalate in the future.

Female Feticide

This is another ethical dilemma we face in society. The PCPNDT Act, enacted in 1994, addresses the imbalance of sex ratio at birth in India due to many factors. In certain conditions affecting the fetus, knowing the gender of the fetus is crucial for prognostication. Yet, by law, the sex of the child cannot be revealed to the family. This gives rise to peculiar problems during counseling for the condition.

China and India seem to place the highest premium on male children. The reasons are many. In India, overriding factors include the desire to continue the family name, the belief that only a male child can perform last rites after death, and the notion that male children provide better care for their parents in old age. Rather than focusing on laws like the PCPNDT Act that punish doctors, education may be more effective in changing societal perceptions. In the West, it is generally accepted that parents should know the sex if desired. This is certainly a battle India has to win in the future. Governmental efforts and societal education appear to be gradually progressing. 

This is a graph showing the sex ratios at birth across the world. China and India have the most skewed ratios.

Note: Read Part Two Here

Selected References and Further Readings

  1. Gates EA: Ethical considerations in prenatal diagnosis, In Fetal Medicine [Special Issue]. West J Med (1993)

  2. Ethical considerations in prenatal genomic testing Ruth Horn, Alison Hall, Anneke Lucassen (Best Practice & Research Clinical Obstetrics & Gynaecology 97 (2024) 

  3. Ethical challenges in fetal surgery Anna Smajdor (J Med Ethics 2011)

  4. Ethical issues in prenatal genetic diagnosis. Guidance for clinical practice. Report of the Joint Committee on Genomics in Medicine. London: RCP, RCPath and BSGM (2022)

  5. Legal and ethical issues in fetal surgery Bernard M. Dickens, Rebecca J. Cook International Journal of Gynecology and Obstetrics (2011) 

  6. Ethical issues associated with prenatal screening using noninvasive prenatal testing for sex chromosome aneuploidy Molly Johnston et al (Prenatal Diagnosis. 2023).

  7. “Selfless Morality and the Moral Self” in Cultures Differ Differently: Selected Essays of S.N. Balagangadhara (2022) edited by Jakob De Roover, Sarika Rao. Also available at https://www.hipkapi.com/2011/03/05/comparative-anthropology-and-moral-domains-an-essay-on-selfless-morality-and-the-moral-self-s-n-balagangadhara/

  8. What does it mean to be ‘Indian’? by Sarika Rao S.N. Balagangadhara (2012)

  9. Abortion: Is It Possible To Be Both “Pro-Life” And “Pro-Choice”? by Carl Sagan and Ann Druyan (1990)

  10. Abortion, a Dharmic Perspective by Nithin Sridhar (2021)

  11. Renewing Eternity: Traditional Perspectives for the Modern Hindu by Margatham (2025)

  12. The Crisis of the Modern World by René Guénon (1923)