To screen, or not to screen? Have we anything to fear from genetic screening?

This essay was written by Abida Gani and was first published in the 2011/12 Mill Hill Essays.

To screen, or not to screen, that is the question. Cystic fibrosis, Huntington’s, sickle cell anaemia, Tay-Sachs and Canavan disease are just a few of the many diseases that can now be screened for, thanks to advances in science. But what are the limitations of genetic screening? Could we test for factors other than genetic diseases? Cue the opening scene of Andrew Niccol’s 1997 sci-fi film Gattaca in which the birth of the protagonist is quickly followed by a blood test that reveals detailed genetic information about the newborn, including the probabilities of having certain disorders and health conditions. Genetic screening has become a somewhat controversial topic in society, but do we really have anything to fear from it?

Many people are the under the impression that genetic screening is a fairly recent discovery. But the history of genetic testing began sometime between 1879 and 1882 when Walther Flemming discovered chromosomes. Fast forward some 100 years and all newborns were being tested for PKU (phenylketonuria), a disease in which brain function deteriorates due to a build-up of phenylalanine in the blood. If the child was shown to have PKU, a strict diet would be enforced in order to preserve brain function. Another positive outcome of genetic screening is seen in the Jewish community. A group called ‘Dor Yeshorim’, based in Brooklyn, New York, completely transformed Tay-Sachs disease testing by screening young people for this disease to determine if they were likely to produce offspring with two copies of the Tay-Sachs gene. Some may call it selective breeding, but the disease has completely disappeared from this particular population.

In contrast to these benefits, many people fear genetic screening. Some have concerns about insurance companies using genetic information to decide whether to provide cover for individuals. Could there be such a thing as genetic discrimination? These concerns could deter people from genetic screening, because of anxiety that it will affect their ability to acquire health or life insurance. At the moment, companies cannot demand screening and it is not mandatory for policies worth less than £100,000 or for new mortgages. Nonetheless companies are allowed to ask for the results of tests if an individual has already had one. Although genetic information is confidential, people still have this fear.

There are many advantages of genetic screening, one of them simply being the knowledge gained from it. An individual can find out if they are at risk of inheriting a particular disease or if they are a carrier of a disease. If the diagnosis is certain, individuals can prepare for it by gaining more knowledge of that disease or through genetic counselling. Carrier screening is an advantage to couples who have a family history of genetic disorders and want to have children. Through testing they can weigh up the risks and chances of their child having the disease based on their genes. Furthermore if a genetic abnormality is found patients can seek early treatment that may allow them to live a longer and fulfilling life. If a cancer-causing gene is found, individuals can alter their lifestyle in order to avoid the expression of that particular gene.

Many people fear this idea of knowing too much about themselves. Imagine if you get screened and you find out that you will develop an incurable disease like Huntington’s that will lead to your inevitable death, how would you feel? There are also many ethical issues surrounding genetic screening: some may view it as a step towards a world of ‘designer’ babies or a world where eugenics is socially acceptable. Many religious groups oppose and fear genetic screening as it is considered to be interfering with God’s creation. Roman Catholics in particular oppose it because foetal genetic screening may lead to people choosing to terminate a pregnancy if the child is found to have a genetic disease, and this is incompatible with their belief in the sanctity of life. The main fear from genetic screening is the possibility that ‘perfect genes’ may become an ideal, so that people who are not genetically perfect might be treated as inferior.

Throughout history new and controversial scientific discoveries have provoked uproar from society because of fear of the unknown. When Galileo argued for the theory of Copernicus, that the Earth is not the centre of the cosmos, he was persecuted for the crime of heresy. But without new ideas there would be no scientific progress or progress in our lives and lifestyles. Our fear of genetic screening may be because it is a topic that pushes the boundaries of human ethics well beyond our comfort zone. But in the beginning there is always fear and uncertainty; as we gain knowledge and experience society will slowly start to accept genetic screening just as society accepted the Copernican system. Genetic screening has numerous exciting prospects but they come with a few difficulties. So do we have anything to fear from genetic screening? At this moment in time many would say no, but who knows what the future may hold.


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