Issue link: https://maltatoday.uberflip.com/i/1367395
13 NEWS maltatoday | SUNDAY • 2 MAY 2021 all known genetic disorders. However, it depends also on what the legislator allows. In the UK, the Human Fertilisa- tion and Embryology Authori- ty, a regulator, allows testing to take place for over 600 genetic conditions, including Thalas- semia, Down's Syndrome, Hun- tington Disease, ALS, muscular dystrophy, Fragile X Syndrome, Alzheimer's Disease and others. Does PGD alter the embryo ge- netically? No. Its purpose is to test em- bryos for genetic defects. Who is eligible to undergo PGD? Malta has no regulations on PGD and the law does not spec- ify who is eligible to undergo a diagnostic test on the embryo. In the UK, PGD can be offered if the woman has ended previ- ous pregnancies because of a serious genetic condition; if the woman already has a child with a serious genetic condition and wants to avoid this happening again; if there is a family history of a serious genetic condition; or if there is a family history of chromosome problems. What can couples, in Malta, who are at risk of passing on an inherited disorder do to de- crease the risk? As things stand today, they can choose to remain childless, adopt a child or undergo IVF with donated gametes, which became a possibility after the law changed in 2018. They can also opt to conceive natural- ly and accept the risk of their child inheriting the genetic condition. They can choose to undergo IVF treatment abroad, where PGD is also offered as part of the service. Another option is to conceive naturally and undergo conven- tional prenatal diagnosis (PND) following conception. Two such tests are chorionic vil- lus sampling or amniocentesis and are carried out at around 12 and 15 weeks after concep- tion. If the foetus is found to have the genetic condition of concern, the parents have to make difficult decisions about whether or not to terminate the pregnancy or continue with it. However, given that abortion is illegal in Malta, this can only be done abroad. What are the ethical considera- tions linked to PGD? Discarding embryos found to be carrying a genetic disorder can be objectionable to some who believe life starts at con- ception and no embryo should be thrown away or used for sci- entific experimentation. How- ever, there is another ethical consideration concerning dis- abled persons and whether so- ciety should strive to eliminate this diversity, even in those cas- es where babies born with a ge- netic disorder can still grow up to be functional adults if given the right support. Others believe PGD can lead to the selection of embryos based on physical characteris- tics, fearing the creation of eu- genic programmes. ksansone@mediatoday.com.mt n this image we see the process to follow step by step when it comes to PGD embryo testing. To begin with, it would be necessary to fertilize the eggs and sperm in the laboratory in order to generate the embryos. Normally, these embryos are kept in culture until day 3 of development. The embryo is then biopsied, a cell is removed and placed in the tube (tubing) for genetic analysis. In this way, it will be possible to know which embryos are genetically normal and which ones have some genetic alteration and, therefore, must be discarded for the transfer. LAURA CALLEJA ETHICAL debates on PGD testing tend to be squared around the respect for life and the integrity of selecting hu- man beings at their concep- tion, a process that mandates discarding embryos that are unwanted. Earlier this week, pro-life lobby Doctors for Life de- nounced PGD testing as a pathway to a eugenic process that "only eliminates illness by eliminating the ill", and said that it would be used to give the healthy a chance at life, while condemning the sick to be destroyed. But the group even claimed that sufferers of such genetic conditions often selected for PGD, such as cystic fibrosis, could look forward to a life expectancy approaching 50. "We must bear in mind that certain genetic conditions, such as cystic fibrosis, had an abysmal prognosis up un- til a few years ago; they have now become far more treat- able with life expectancy ap- proaching 50 years." Making a case for PGD test- ing to be introduced, pro- choice doctor Isabel Stabile argued that genetic disor- ders, especially in their severe forms, can have a devastat- ing impact on an individual's quality of life and life expec- tancy. "If you speak to couples who wish to make use of PGD, ei- ther because they are carriers, or are mildly affected, or have the major form of the disor- der, their main concern and motivation is always the qual- ity of life of their children," Prof. Stabile said. Prof. Stabile pointed out that they do not want their chil- dren to suffer, possibly in the same way their parents suf- fered from the disease in their life. "Preventing genetic dis- orders through PGD does not mean that the lives of people with disability are not valued. Quite the opposite, PGD em- powers people who have ge- netic disorders to reproduce safely, with the knowledge that their child will almost certainly not be affected by the disorder." She said denying people with genetic disorders access to PGD was an act of disempow- erment and discrimination. However, a spokesperson for Doctors for Life (DFL) said it endorsed the scientific truth that human life starts at fer- tilisation and that once it has begun, it should always be treated with dignity and care, irrespective of the stage of de- velopment. "Embryos are hu- man lives at a very early stage of development," the NGO said. Discarding embryos Maltese law bans the dis- carding of embryos, and per- sons may not start another round of IVF until all fertil- ised embryos are used. Prof. Stabile said the reality of PGD testing was that af- fected genes are not implant- ed with the knowledge they would undoubtedly produce a child affected by the disease. "This inevitably means that certain embryos would have to be discarded, but it has to be pointed out that this is not the same as an abortion." Prof. Stabile reiterated that abortion and the discarding of embryos should not be seen as the same. "Abortion is the termination of pregnancy. In contrast, here we are talking about very early embryos, consisting of a few cells that are still outside of the wom- an's body, and there is no pregnancy at this stage. It is also a fact that the vast major- ity of embryos fail to implant in the uterus and die natu- rally. As to whether embryos could be donated to science, this should be a decision tak- en between the clinician and the couple involved." Prof. Stabile also said em- bryos "are not children", and discarding an embryo with a severe genetic disorder should not be equated with an abor- tion. "Having PGD testing availa- ble does not necessarily mean that parents undergoing IVF must avail themselves of it. It means they will have a choice, one that women in other Eu- ropean countries in their situ- ation have." 'Speak to couples: their main concern is their childrens' lives'