Malaysia needs stricter regulation of the genetic testing of embryos

• Main Authors: Chin, Alexis Heng Boon, Che Mohamad, Che Anuar, Muhsin, Sayyed Mohamed
• Format: Article
• Language: English
• Published: Star Media Group Berhad 2023
• Subjects: KBP1 Islamic law.Shariah.Fiqh; RA Public aspects of medicine
• Online Access: http://irep.iium.edu.my/104083/1/104083_Malaysia%20needs%20stricter%20regulation.pdf; http://irep.iium.edu.my/104083/; https://www.thestar.com.my/opinion/letters/2023/03/14/malaysia-needs-stricter-regulation-of-the-genetic-testing-of-embryos

DOWN syndrome is the most common genetic abnormality in newborns, and it is caused by the presence of an additional chromosome 21. As World Down Syndrome day approaches on March 21, we are reminded of the sobering statistic that around 90% of Down syndrome fetuses are routinely aborted worldwide. The risks of Down syndrome rises with increasing maternal age, which is particularly significant for Malaysia, given the increasing trend of late motherhood in the country. Currently, non-invasive prenatal testing of fetal DNA extracted from the mother’s blood is a reliable and accurate technique for diagnosing a Down syndrome fetus within the mother’s womb. For older women undergoing in vitro fertilisation (IVF) treatment, there is a way of avoiding this abortion dilemma by genetic testing of IVF embryos before they are transferred into the womb; this is done using a procedure known as preimplantation genetic testing for aneuploidy (PGT-A). However, this procedure is highly expensive, tedious, time-consuming and invasive. There are risks of damaging the embryo upon extracting cells for testing. Many experts have pointed out that studies claiming no ill-effects from this type of testing are often based on excellent-quality, healthy, and robust embryos rather than more “delicate”, lower-quality embryos that might suffer more from the procedure. Hence, PGT-A poses greater risks for older women who tend to have lower-quality embryos. Despite its risks and high costs, PGT-A is widely marketed as a means of ensuring healthy births and avoiding Down syndrome fetuses for women undergoing IVF treatment, even though much cheaper and equally accurate prenatal testing methods are available. The major justification is to prevent the necessity of aborting a genetically-abnormal fetus, thus saving the expectant mother the medical risks and emotional trauma of abortion. However, because genetic testing inevitably reveals the sex of the embryo (through identification of X and Y chromosomes), this would give IVF patients an opportunity to secretly select the sex of their embryos without any valid medical reasons. Hence, there is a dire need for Malaysia’s Health Ministry to impose stricter regulations on new technologies for the genetic screening and selection of IVF embryos. In particular, there must be a clear boundary between embryo testing and selection to avoid serious harm from known genetic diseases and screening for non-disease-related, socially-desirable traits including sex selection without valid medical reasons.