Down’s Syndrome

A child with Down’s Syndrome will have mental disabilities, certain physical irregularities and will need a lot of care, but it is not a fatal disease and as a result there are debates about whether this is strong enough grounds for choosing to abort a pregnancy. People with Down’s Syndrome can have jobs, carry out day-to-day activities and live happy, relatively fulfilled lives.

In some cultures Down’s Syndrome are not considered significantly different from any other person (Detwyller, 1993), and many argue that one of the main dangers in being able to choose whether someone with Down’s Syndrome should live is that society may move towards a eugenic ideal of what individuals should be like and begin aborting on other grounds as well. There are considerations, however, about who will care for an individual with Down’s Syndrome, especially once the parents have grown older and are not capable anymore.

Questions have been raised about whether it is fair to expect other relatives to step in and lend a hand. Despite disagreements over whether or not abortion should be permitted on the grounds of a foetus having Down’s Syndrome, the genetic tests provide other functions such as preparing parents for having a Down’s Syndrome child, and giving them support and education about what lies ahead. A small minority may disagree with having the tests at all due to the risk involved, but new, less invasive techniques are being created that may counteract this argument (Hahn et al, 2008).

Tests such as that for Down’s Syndrome have benefits in enabling a couple to make an informed decision and prepare for the child itself. In September 2002 newspapers1 reported that scientists had identified a gene responsible for babies born with a cleft lip and palate, Van der Woude syndrome. Following this there were debates over whether or not the condition was serious enough to allow prenatal tests to see whether a foetus had the gene, and for the parents to therefore have the option of termination on the grounds of serious disability.

There has been a lot of controversy over this issue as Van der Woude syndrome does not impair an individual’s mental abilities, and can be treated meaning there is no reason that an individual is not fully capable despite having it. In March 20052 the British courts decided not to prosecute two doctors who authorized an abortion due to a cleft lip and palate on the grounds that the child would be handicapped.

This event resulted in uproar as debates surged over whether a fixable facial deformity is grounds for terminating a pregnancy, and if so what does this tell us about the society in which we live in regard to physical appearance and aesthetics. Not only is there the worry about the removal of certain traits or features that are considered less desirable from the population, but there is also the worry that some couples may want abuse technology and genetic tests to ensure that their child has a specific disability.

This has been brought into light recently in the case of deaf couples wanting to screen for and ensure that their child is also deaf (Lau and Leung, 2005), bringing into question whether people should be allowed to choose for such traits. Technologies exist and are being created opening the possibilities of prenatal determination of the sex of a foetus, and therefore gender selection through abortion possible (van Balen and Inhorn, 2003).

Though abortion is illegal, it is another trait that could be open to abuse by couples that want a child of a specific gender, which is particularly common in countries such as China with its one child policy. Technologies are also being created that will allow DNA weighted semen selection (Ibid), as well as the existence of IVF during which it is possible that preimplantation diagnosis and selection could take place. Preimplantation genetic diagnosis during IVF can be done using blastomere biopsy of a couple of cells from an eight to ten cell embryo (Lau and Leung, 2005).

Normal embryos can then be replaced in the uterine cavity to become a foetus. The cells taken and tested also give information about other inherited traits, such as physical features or intelligence, and there are worries that couples will at some point in the near future begin wanting to choose the embryo which contains the most desirable genetic information. The possibility of being able to pick and choose features and traits creates great anxiety, as it opens up the potential for designer babies and emphasizes the common misperception that everyone in society should fit into a conventional idea about perfection.

Another worry is that these tests will only be available to the wealthy, thus dividing society to an even greater extent in regard to wealth and creating a genetic elite within society. The ethics behind the pursuit of perfection is a worry for many, but most people are still so horrified by the idea of a Frankenstein-like scenario that it is unlikely to become common practice any time soon. That this technology exists has brought to the foreground questions over the pressure to test for and possibly abort foetuses with abnormalities (Ibid), and the potential emotional problems that the tests may cause for pregnant women.

Uncertainties have arisen over whether, when these technologies are commercially available, they should be on offer to all pregnant women or just those that ask for the tests. After all, the tests are intended to benefit the women and allow them to make informed choices, not make them feel pressured into feeling they must make decisions about whether they want a child who may have imperfections and deal with the consequences of what they decide.

It is important, therefore, whilst embarking on advances in the field of genetic technology to have an infrastructure in place that can provide support to pregnant women, the child and families. Genetic tests before, during and just after pregnancy are done for a variety of reasons, from abnormal screening results to the knowledge that a trait is present within a family. These tests have several purposes. Initially, by testing for abnormalities they allow a couple that are going to have a child with a certain disorder or disease the option to choose to terminate the pregnancy.

There are ethical issues over abortion generally and where it is acceptable to draw the line. Laws exist that aim to put controls over abortion, whilst health services attempt to provide support, counseling and information to the couple. Secondly, of the trait is treatable, genetic tests allow for preventative treatment from an early stage, or even foetal surgery if possible. Foetal surgery does hold risk for both mother and child, but it may be that by doing so this prevents any worse damage or danger in the future.

Early testing during pregnancy can allow safer termination and treatment, but can also provide couples that decide to keep the child despite any defects the time to learn about what measures they must take and get used to the idea of it. Finally, if a couple is aware that an autosomal recessive disease is present in both their families, and they are using NRTs for assistance in having a child anyway, there is the possibility that they could ensure that the embryo they use does not have the allele for that disease.

This possibility of selecting traits has opened up debates on the ethical issues of being able to select other traits as well and the effect this will have on society as a whole. Other ethical issues range from access to the information provided by genetic tests, to tolerance within society for those who have some form of disability, and the effects on the emotional stability of pregnant women who feel pressured to have these tests carried out. Due to the costs and amount of controversy surrounding new innovations, it is unlikely that certain technologies will be commercially available for some time.

As for the tests that are currently used, it is indisputable that there are huge benefits to the pregnant woman, her partner and family, and the child itself in their availability. Provided that laws are in place, and that the woman is able to make her own decisions, it is unlikely that the worries behind the more extreme ethical battles will become reality just yet. For the time being, it seems the purposes for carrying out genetic tests during pregnancy, as well as before and directly after, including the ethical reasons for having them, outweigh the ethical objections.

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