Judgement: Abortion of children with Down Syndrome

Judgement: Abortion of children with Down Syndrome by Aditi Sannidhi student of National law institute university, Bhopal

Komal Hilwale vs the State of Maharashtra

Introduction

The Supreme Court on 16th June 2020, in the case of Komal Hilwale v State of Maharashtra allowed the woman with twin pregnancy to abort one of her 25-weeks old fetuses which was diagnosed with down syndrome, on the grounds of serious fetal abnormalities. Medical jurisprudence has faced a quandary over abortion of fetuses diagnosed with down syndrome. The reproductive rights of the mother and the rights of the unborn child; neither seems to outweigh each other. This decision is one amongst the various decisions that India has seen on the issue of abortion of down syndrome fetuses. Interestingly, different courts have arrived at different conclusions in this regard over the years.

In India, the c governs the abortion laws. According to the Act, pregnancy can be terminated by registered medical practitioners when-

i) the continuation of pregnancy might seriously injure the physical or mental health or risk the life of the pregnant woman or

ii) there is a substantial risk that the child if born, might suffer from serious physical or mental abnormalities.

Termination might be allowed in such circumstances if the length of the pregnancy has not exceeded 20 weeks. The parliament in the Medical Termination of Pregnancy Amendment Bill, 2014 has even proposed to increase the cap to beyond 20 weeks of pregnancy. Does the question still remain whether the termination of a fetus with genetic disorders such as Down Syndrome is allowed? Should the reproductive rights of women be decided by the courts? What impact does it have on the disabled community?

The Disease

Down syndrome is a genetic disorder that causes intellectual disability in humans. This abnormality is caused due to an additional copy of chromosome; chromosome 21 in infants. The extra genetic material alters the growth and development of the babies and also causes intellectual disability. Apart from developing typical physical characteristics, the babies might also have heart defects, hearing issues and vision problems. They are also more prone to developing Alzheimer’s disease, at an early age of 40, compared to the common onset of 65 for the general population. However, not all children face latter complications. Generally, they are slow at developing motor skills such as crawling, walking and feeding and do not possess the usual intellectual capabilities. Over 30,000 children are born with Down Syndrome in India annually, the highest number in the world. Although the mortality rate for children born with down syndrome all over the world has reduced; the genetic disease is still associated with high mortality in India, largely due to the outdated advice that many doctors give to parents.

Prenatal Screening Available for Down Syndrome

Tests for down syndrome is offered in two stages:

1. Screening Test: The combined first trimester screening involves assessment of data obtained by three different tests; a blood test, Nuchal Translucency (NT) test and nasal bone data to arrive at a conclusion. However, the NT test is not a diagnostic test and is only 80% reliable. Further, none of these prenatal screens will be able to definitively diagnose Down Syndrome and only tell the chances of it’s happening. Apart from being expensive, these facilities are also available only in select good cities.
2. Diagnostic Test: Diagnostic tests can be done by Chorionic Villus Sampling (CVS). While these tests boast a 99% reliability, they are also invasive to pregnancy and carry a high risk of miscarriage. Furthermore, CVS tests take 2-3 weeks to give a fuller analysis, when it becomes harder to have an abortion.

The global trends on the termination of fetuses with down syndrome have been worrying. Many countries around the world show a high rate of termination. About 750 children are born with Down’s syndrome every year in the U.K. Further, the proportion of women opting for a termination after the prenatal diagnosis there has been recorded around 90% in 2011, 2012 and 2013. In Denmark, where all pregnant women have been offered screening scans since 2004, the disorder is heading for “extinction.”  France on the other hand has a termination rate of 77%. 

In Iceland, it is required by the government from the health care staff to inform expecting mothers about the availability of the prenatal screening test for down syndrome. Although undergoing the screening is optional, almost 85% of women undergo these tests in Iceland.  A majority of these women choose to abort their pregnancy as soon as they know of the positive result. This has led to nearly 100% rate of termination of down syndrome fetuses and has resulted in the elimination of the disorder from the country almost entirely. The trend for the last decade shows that only 2-3 babies with down syndrome are born in Iceland every year.

The Right to Abort

Technologically advanced options for prenatal testing have posed difficult moral choices, that is, whether genetic anomaly or defect justifies an abortion. Down syndrome continues to redefine the abortion debate. Though not widely discussed in public, the default assumption is that aborting after a Down syndrome diagnosis is the natural and obvious thing to do. It is not right to force someone to have a child merely because other families report positive experiences because aborting a child, at the end of the day, is a choice; a personal choice. The rights of the disabled and reproductive rights both are based on the principles of equality, non-discrimination, inclusivity and bodily autonomy. While promoting disability rights, autonomous choices must also be promoted. The state cannot dictate or control a woman’s right to abortion, unless it’s for medical reasons. Women cannot be asked to personally take on the burden of contributing to an inclusive environment for other children with down children.

Responsibility of the Medical Practitioners

It is indeed true that raising a child with Down Syndrome requires extra care, effort and resources. However, it is not the only reason that parents decide to abort their child. The myths surrounding Down Syndrome are many and these myths often drive the decision of the parents of aborting their child. Many women do not even know what it is like to raise a child with down syndrome and are so swept in fear that they often presume it would be an impossible task. Given the lack of awareness and education about the disease in India, chances are, many women face this problem.

Medical practitioners have a key role to play in this situation, they should not only be responsible for the diagnosis but also counselling the parents and educating them about the disorder. Parents, when they discover that they might be expecting a child with down syndrome, are bemused and full of questions. Prevalent myths such as people with down syndrome cannot read or write or they cannot get jobs and live independently result in parents wanting to abort a child with down syndrome. They imagine their life to be filled with constant visits to the doctor, appointments at special schools and their child always being dependent on them. These situations are not only mentally burdening, but also financially burdening which is why parents might consider aborting their child as a prudent decision. However, these questions are completely natural and should in fact be answered by a competent medical practitioner or counsellor. They must educate the parents with reliable information about down syndrome and how they can take care of their child. The most essential part of this counselling should be enlightening the parents that their child can actually live a nearly normal and healthy life. There must be ‘pre-information’ laws, these laws must require doctors and genetic counsellors to provide what advocates call a more ‘balanced’ portrayal of the disability at the point of diagnosis.

Drawing the Line

While no judge can and should not take away a parent’s right to abortion, drawing the line between bodily autonomy and inclusivity is necessary. Since abortion is a time-sensitive issue, it is argued that due to the excessive time that pre-natal procedures require, abortion becomes risky and must be avoided. Further, the procedure of getting prenatal testing is a privileged facility available to some. If parents equipped with resources to take care of the child chose to abort their child merely because their child might be born with down syndrome, it creates a less inclusive space for the already existing children with down syndrome. The primary reason that people with down syndrome are not treated equally as other individuals is due to the stigma and misconceptions surrounding the syndrome.

Society is still unaware of the disorder and considers it a form of mental retardation. While taking care of children with down syndrome is harder, the process can be made easier if there are societal changes in the way they are perceived and an environment is created for them where they are accepted. Majority of the problems stem from the non-inclusive environment that is created for these children but aborting them is not the way to go here since it only adds to that narrative.