ETHICAL QUANDARIES IN DOWN’S SYNDROME

There was a celebration of World Down Syndrome Day recently with great fervour. The agenda was that the Down syndrome population must have opportunities to live fulfilling lives and be included on a full and equal basis with others in all aspects of society. However, the way society is dealing with the Down Syndrome population goes completely against the 2030 UN Agenda for Sustainable Development, a global plan of action for people, planet, and prosperity, pledging that “no one will be left behind”. The sad fact is that individuals with Down syndrome struggle with all aspects of their lives, especially education and employment. Their wholesome acceptance and integration into society are also matters of great difficulty.

Down’s syndrome Children can express extreme love and contentment towards their family and society, but they do have varying levels of intellectual impairment. However, there is a need for a world-wide study on living Down Syndrome patients to assess their own perspective. A small study of 284 children with Down Syndrome over 12 years of age titled ‘Self-perceptions from People with Down Syndrome’ showed that nearly 99% of people with the syndrome were happy with their lives; 97% liked who they are; and 96% liked how they look. Nearly 99% of people with Down Syndrome expressed love for their families, and 97% liked their brothers and sisters. While 86% of people with the syndrome felt they could make friends easily, those with difficulties mostly had isolating living situations. Only a small percentage expressed sadness about their lives, even though the overwhelming majority of people surveyed indicated a happy and fulfilling life.

This is indeed disturbing, as babies born with Down Syndrome are steadily decreasing in number. The entire antenatal screening strategy, including blood tests on the pregnant mother, ultrasound scans, and genetic analysis on the foetal tissues, is targeted worldwide to detect Down Syndrome and then terminate them. One author puts it succinctly as a ‘search-and-destroy’ technology. Not only in India, but in ‘advanced’ countries like Europe and America, termination of these babies has become the norm. Iceland has almost achieved a 100% elimination rate for Down Syndrome.

After a diagnosis of Down Syndrome, the counselling by the medical fraternity, instead of giving the family options, is heavily biassed towards terminating the pregnancy. Most families comply with this. It is not any bad intention on the part of the medical profession, but simply the moral and ethical worry of continuing a pregnancy that is going to deliver an ‘abnormal’ baby. So here comes the great ethical quandary and paradox: on the one hand, we are trying to integrate the Down Syndrome population into society by calling them equal, but on the other, we are doing the best possible to prevent them from being born.

There is a strong group that feels that no Down Syndrome foetus should have a termination. The diagnosis should only prepare the parents and society to receive the baby. It is, of course, highly Utopian in the present society. The ethical justification for aborting a Down Syndrome baby (or any other malformation) because it is going to be a burden on the family is disturbingly ambiguous because the same logic can apply to a female child, causing a great disturbance to the social life of some mothers. Some controversial ethicists say there is no difference in such scenarios between female infanticide and terminating for Down Syndrome.

It is a difficult situation for society when families with a Down Syndrome diagnosis on the foetus, medical professionals, and governmental machinery interact in many discordant voices. The ethical, moral, legal, medical, and social dimensions of solving these paradoxes need a more detailed and nuanced discussion. Down’s syndrome is one prototypical example, of course. The ethical problems and issues are going to only increase in the future as more diseases enter the domain of pre-delivery diagnosis.

A hypothetical scenario for the future. The doctor declares, based on genetic analysis, that the foetus is going to become an alcoholic transgender person in the future. How many parents would opt to continue with the pregnancy? How many alcoholics or transgender people would remain in society over a gradual period? They are not completely possible today, but the future of science and genetics is distinctly optimistic. Of course, some authors deny claims about the discovery of genes for complex human traits like sexual orientation or alcoholism. That is almost always a fictitious science, something akin to phrenology, according to them. These authorities feel that the genetic code is very complex for most human traits, with hundreds and thousands of genes involved in each human trait. And all the genes interact in a highly complicated manner with the environment they are in. The paradigm of one gene leading to one disease or one trait simply cannot cover the complex behaviour of humans. But science has many times whacked someone who said, ‘It’s impossible.’

These are very disturbing issues for society, but finally, is it a healthy society that does not accept any abnormality outside its definition of norms? Some claim strongly that the assessment of the maturity of a society is determined by how it deals with its members who cannot contribute anything—the handicapped, the old, the diseased, and even the animals who are useless. Are we going in the direction of immaturity even as so-called scientific and material progress is happening?