Verdict: Abortion of Children with Down Syndrome by Aditi Sannidhi, a student at the National Law Institute University, Bhopal
Komal Hilwale v Maharashtra State
The Supreme Court on June 16, 2020, in the Komal Hilwale v Maharashtra State case, allowed the woman with twin pregnancy to abort one of her 25-week-old fetuses diagnosed with Down syndrome due to serious fetal abnormalities. Medical jurisprudence has faced a dilemma regarding the abortion of fetuses diagnosed with Down syndrome. The reproductive rights of the mother and the rights of the unborn child; none seem to outweigh each other. This decision is one of the various decisions India has made regarding the abortion of fetuses with Down syndrome. Interestingly, different courts over the years have come to different conclusions in this regard.
In India, the c regulates the abortion laws. According to the law, the pregnancy can be terminated by registered doctors if
i) Continuing the pregnancy can seriously affect the physical or mental health or endanger the life of the pregnant woman
ii) There is a significant risk that the child will suffer from serious physical or mental abnormalities at birth.
Termination may be permissible in such circumstances if the pregnancy did not exceed 20 weeks. In the 2014 bill to amend medical termination of pregnancy, parliament even proposed raising the upper limit to more than 20 weeks of pregnancy. The question that remains open is whether termination of a fetus with genetic disorders such as Down syndrome is permissible? Should the reproductive rights of women be ruled by the courts? What impact does it have on the disabled community?
Down syndrome is a genetic disorder that causes intellectual disability in humans. This abnormality is caused by an extra copy of the chromosome; Chromosome 21 in infants. The extra genetic material alters the babies’ growth and development, and also causes intellectual disabilities. In addition to developing typical physical characteristics, babies can also have heart defects, hearing problems, and visual disorders. They are also more prone to developing Alzheimer’s disease early in the age of 40, compared to the common occurrence of 65 in the general population. However, not all children face the latter complications. They are generally slow to develop motor skills, such as crawling, walking, and feeding, and do not have the usual intellectual skills. Over 30,000 children with Down syndrome are born in India every year, the highest number in the world. Although the death rate for children with Down syndrome has decreased worldwide; The genetic disease is still associated with high mortality rates in India, mainly due to the outdated advice many doctors give to parents.
Prenatal screening available for Down syndrome
Tests for Down syndrome are offered in two phases:
- Screening Test: The first trimester combined screening involves assessing data obtained through three different tests. a blood test, a neck transparency test (NT), and nasal bone data to come to a conclusion. However, the NT test is not a diagnostic test and is only 80% reliable. In addition, none of these prenatal screens can definitely diagnose Down syndrome and only indicate the likelihood of it occurring. Not only are these facilities expensive, they are only available in select good cities.
- Diagnostic test: Diagnostic tests can be performed by chorionic villus sampling (CVS). While these tests are 99% reliable, they are also invasive to pregnancy and carry a high risk of miscarriage. In addition, CVS tests take 2-3 weeks to get a more complete analysis when it becomes more difficult to perform an abortion.
Global trends in termination of fetuses with Down syndrome have been worrying. Many countries around the world have high churn rates. Around 750 children are born with Down syndrome in the UK each year. In addition, in 2011, 2012 and 2013 a proportion of around 90% of women who decided to quit after the prenatal diagnosis was found. Screening scans have been offered in Denmark, where all pregnant women have been since 2004. The disorder is on the way to “extinction”. France, on the other hand, has a termination rate of 77%.
In Iceland, the government has a duty on health workers to notify expectant mothers of the availability of the prenatal screening test for Down syndrome. Although screening is optional, almost 85% of women in Iceland undergo these tests. A majority of these women choose to terminate their pregnancy as soon as they learn of the positive result. This has resulted in an almost 100% abandonment rate of fetuses with Down syndrome and has resulted in the almost complete elimination of the disorder from the country. The trend over the past decade shows that only 2-3 babies with Down syndrome are born in Iceland each year.
The right to cancel
Technologically advanced prenatal testing options have raised difficult moral choices as to whether a genetic abnormality or defect warrants an abortion. Down syndrome continues to redefine the abortion debate. Although not much discussed in public, the standard assumption is that termination after a diagnosis of Down syndrome is the natural and obvious thing. It is not right to force someone to have a child just because other families have positive experiences, because it is a choice to abandon a child at the end of the day. a personal choice. Disabled people’s rights and reproductive rights are both based on the principles of equality, non-discrimination, inclusivity and physical autonomy. In promoting disability rights, autonomous decision-making must also be encouraged. The state can only dictate or control a woman’s right to an abortion for medical reasons. Women cannot be asked to personally take on the burden of contributing to an inclusive environment for other children with depressed children.
Indeed, it is true that raising a child with Down syndrome requires additional care, effort, and resources. However, this is not the only reason parents choose to abort their child. There are many myths surrounding Down syndrome, and these myths often determine a parent’s decision to abort their child. Many women don’t even know what it is like to raise a child with Down syndrome and are so scared that they often assume it is an impossible task. Given the lack of awareness and education about the disease in India, many women face this problem.
Doctors play a key role in this situation. In addition to being responsible for the diagnosis, you should also advise parents and educate them about the disorder. When parents discover that they may be expecting a child with Down syndrome, they are amused and full of questions. Common myths like people with Down syndrome cannot read or write, or they cannot find work and live independently. This makes parents want to abort a child with Down syndrome. They imagine that their life is filled with constant visits to the doctor, appointments at special schools and the constant dependence of their child on them. These situations are not only mentally stressful, but also financially stressful, which is why parents might consider aborting their child a prudent decision. However, these questions are completely natural and indeed should be answered by a knowledgeable doctor or counselor. You need to provide parents with reliable information about Down syndrome and how to take care of their child. The most important part of this counseling should be to help parents understand that their child can indeed lead a near-normal and healthy life. There must be pre-information laws. These laws must require doctors and genetic counselors to provide a “more balanced” representation of the disability at the time of diagnosis.
Draw a line
While no judge can and should take away a parent’s right to have an abortion, it is necessary to draw the line between physical autonomy and inclusivity. Because abortion is a time sensitive issue, it is argued that because of the excessive time prenatal procedures require, abortion becomes risky and must be avoided. In addition, the procedure for obtaining antenatal tests is a privileged facility available to some. When parents with the resources to care for the child only want to abort their child because their child may have been born with Down syndrome, it creates a less inclusive space for the pre-existing children with Down syndrome . The main reason people with Down syndrome are not treated the same way as other people is because of the stigma and misunderstanding surrounding the syndrome.
Society is still unaware of the disorder and regards it as a form of intellectual disability. While caring for children with Down syndrome is more difficult, the process can be simplified by changing the way they are perceived by society and creating an environment for them in which they are accepted. Most of the problems arise from the non-inclusive environment created for these children, but breaking off is not the way to go as it only adds to this narrative.