ETHICAL QUANDARIES IN DOWN’S SYNDROME

There was a celebration of World Down Syndrome Day recently with great fervour. The agenda was that Down syndrome population must have opportunities to live fulfilling lives; and have an inclusion on a full and equal basis with others, in all aspects of society. However, the way society is dealing with 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 sorry fact is that Down Syndrome individuals struggle with all aspects of their life, especially education and employment. Their wholesome acceptance and integration into the society are a matter of great difficulty too.

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% 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 life even as an overwhelming majority of people surveyed indicated a happy and fulfilling life.

This is disturbing indeed as babies being born with Down Syndrome are steadily decreasing in number. The entire antenatal screening strategies including blood tests on the pregnant mother, ultrasound scans, and genetic analysis on the fetal tissues is targeted world-wide 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 have 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 options to the family, is heavily biased 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, ethical worry of continuing a pregnancy which 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 Down Syndrome population into the 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 who feel that no Down Syndrome foetus should have a termination. The diagnosis should be to only prepare the parents and society to receive the baby. It is of course highly Utopian in the present society. The ethical justification in 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 ethicists-controversial certainly- say there is no difference in such scenarios between female infanticide and terminating for Down Syndrome.

It is a difficult situation for society, families with a Down Syndrome diagnosis on the foetus, medical professionals, and governmental machinery interacting in many discordant voices. The ethical, moral, legal, medical, and social dimensions in 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 in the future. How many parents would opt to continue with the pregnancy? How many alcoholics or transgenders would remain in the 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 of discovery of genes for complex human traits like sexual orientation or alcoholism. That is almost always 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 being 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 cannot cover the simply too complex behaviour of humans. But science has many times whacked someone who said, ‘impossible.’

These are very disturbing issues for the society, but finally, is it a healthy society which does not accept any abnormality outside its definition of norms? Some claim strongly that the assessment of maturity of a society is 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 the so called scientific and material progress is happening?

 

 

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