Genetic testing should not compromise our morals

The recent introduction of a new pre-natal screening on the NHS for Down’s Syndrome has sparked a heated debate regarding its implications, namely the impact on the future of the
Down’s Syndrome community.

Some people are fearful that this test will cause the extinction of this community, as the thought would be that once the syndrome was detected the “obvious” choice would be to abort the foetus.

Others are concerned that if one chooses not to abort, the choice would be judged unfavourably by society, leading to the withdrawal of the help that is provided by the government.

So, the question arises: Should we let nature take its course and ignore advances in medical science for fear of the consequences that they will impose on society? Or should we allow ourselves the ability to choose by embracing these new technologies while taking into account the ethical consequences of these practices?

In the past decade, genetic testing has become standard practice in most advanced countries. For example, Israel’s medical services offer a large range of genetic testing free of charge.

These tests include screenings for genetic diseases such as Tay-Sachs, cystic fibrosis, Fragile X Syndrome and Canavan disease.

Once disease is detected, couples are referred to IVF clinics and are then given the opportunity to undergo pre-implantation genetic diagnosis (PGD), which is the detection of an affected embryo, and the implantation of a healthy embryo into the womb, thereby securing the birth of a healthy baby.

Couples have the right to choose to undergo these tests or to forgo them entirely.

As such, the question becomes whether we are allowed to chastise for being “irresponsible” a couple who do not undergo genetic testing and bring a child with a genetic syndrome into the world.

Equally, should we then assume that all responsibility for the child – emotional, physical, financial or otherwise – resides solely with the couple? Given that, we then have to wonder if that’s the kind of society we want to live in.

Working at ALEH, Israel’s foremost network of state-of-the-art facilities for children with severe physical and cognitive disabilities, has taught me not to judge parents when they make tough decisions.

We, the medical staff and caregivers, look after their children, but ultimately it is the parents who are the legal guardians.

It is our place to guide and help them, but never to judge them.

Making choices is a part of our lives but to make them we need information. When that information is available, the medical professionals need to share it so that the choices made are informed ones.

However, once the information is shared, we need to respect the choices made by other people involved.

This is not just a matter of tactfulness but of crucial social reform, so that when a person is faced with a weighty decision, such as a diagnosis of Down’s Syndrome, he or she will make a decision based on what’s right for the family and not on how society will judge them.

Medical science is advancing all the time. It cannot be stopped, nor should it be.

As a society, our focus should be on how to use for the good the information from new screenings without compromising the values and morals we live by.

We should also make sure that we stand by each other at all times, and never allow our opinions of other people’s choices to become a barrier to true societal progress.

About the Author
Rikki is Director of nursing at Aleh, which is Israel's largest network of residential facilities for children with severe physical and cognitive disabilities
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