Issue 37
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Two professors from the UAE University participated in the Second Pan Arab Human Genetics Conference held at the Al Bustan Rotana Hotel in Dubai, November 20-22.
Aimed to enrich learning on genetic diseases prevalent in the Middle East, the meeting also held a dialogue between Arab experts including Dr. Bassam Ali, Associate Professor of Molecular Genetics, and Leader of the Genetics and Development Research Priority Group; and Dr. Lihadh Al-Gazali, Professor of Clinical Genetics, with the rest of the international scientific community about the ethical issues involved in genetic technology. About 109 abstracts, 30 lectures and 83 poster presentations from 31 countries were illustrated and explained.
“Genetic diseases continue to be a major health problem in many countries including Arab countries, and therefore these meetings are essential. We are already using some genetic technology here in the UAE in the form of diagnosis of genetic diseases and screening of individuals for genetic defects. The Dubai Genetics and the Thalassemia Centre have been active in this field for several years now with clear benefits to the affected individuals and their families,” said Dr. Ali.
Prof. Richard Cotton, President of The Human Variome Project, delivered the first two lectures on The Human Variome Project and Pilot Projects and on The Ethics of Mutation Databases: Correctness in Reporting Genetic Variation and its Effects. Afterwards, Prof. Edison Liu, President of The Human Genome Organisation, which headed the Human Genome Project, discussed the Integration of Genomic Sciences and Genomic Medicine.
Among of the other keynote speakers are Prof. Henk ten Have, Director of the Division of Ethics of Science and Technology of UNESCO, who talk about International Bioethics and Human Genetics; Dr. Danuta Krotoski, Acting Associate Director of Prevention Research and International Programs (PRIP), National Institute of Child Health & Development (NICHD), and National Institute of Health (NIH); and Dr. Myles Axton, Editor of Nature Genetics, who spoke about the Priorities, Publication and Credit.
A two day-workshop tackling the Fluorescence in situ Hybridization (FISH) and its Applications in Modern Medical Practice was also organized at the Molecular Cytogenetic Laboratory of the Genetics Department at the Al Wasl Hospital in Dubai, November 18-19.
The Second Pan Arab Human Genetics Conference was supported by the Department of Health and Medical Services, Islamic Affairs and Charitable Activities Department, Human Variome Project and Human Genome Organization. Studies deliberated were from Algeria, Australia, Bahrain, Denmark, Egypt, Finland, France, Germany, India, Iran, Iraq, Japan, Jordan, Kuwait, Lebanon, Malaysia, Maldives, Morocco, The Netherlands, Oman, Pakistan, Palestine, Qatar, Saudi Arabia, Spain, Sudan, Switzerland, Tunisia, UAE, UK and USA.
The Science of Heredity
Genetics is the science of heredity and variation in living organisms. Knowledge about the subject has been implicitly used in prehistoric times to conduct selective breeding in animals and plants. The modern science of genetics, however, seeks to understand the mechanisms of inheritance, which starts from the mutation and interaction of the genes, and find the genetic causes of human diseases.
According to The Centre for Arab Genomic Studies (CAGS), a division of Sheikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences, the Gulf region has one of the highest rates of genetic disorders, with 250 conditions out of the 3000 recognized genetic diseases recorded in the UAE such as haemoglobinopathies, glucose-6-phosphate dehydrogenase deficiency, congenital malformations, Down syndrome, thalassemia, sickle cell anemia and metabolic disorders. Infant mortality, morbidity and handicap are the usual effects.
“We, at the Faculty of Medicine and Health Sciences, are also doing our part in finding the genes and mutations responsible for several rare and common genetic diseases. If those are not prevented, you can imagine the socioeconomic costs it would have at the government level and family level. Genetic technology related to diagnosis and prevention is therefore welcome,” Dr. Ali explained.
“For many of those diseases, we can only reduce their occurrence by effective screening of the parents, and then offer genetic counseling, pre-implantation diagnosis and perhaps prenatal diagnosis to members of those families. Personally, I do not see many disadvantages regarding the practice [of] genetic technology. Creating human beings based on specifications is not possible, and of course, not ethical. However, selecting embryos that are healthy or free of a particular disease prior to implanting them into a mother’s womb is possible and useful. This technology though is not available in the UAE yet.”
In the study Genetic Disorders in the Arab World, Al-Gazali, together with Dr. Hanan Hamamy, Professor of Human Genetics at the National Center for Diabetes, Endocrinology and Genetics in Amman, Jordan; and Dr. Shaikha Al-Arrayad, Consultant Geneticist at the Salmaniya Medical Complex in Bahrain, found out that high consanguinity rates, isolated subpopulations with a high level of inbreeding and existence of tribal societies are the reasons why genetic disorders are widespread in Arab countries.
Restrictions brought by certain cultural, legal and religious limitations as well as the lack of preventive public health measures and inadequate healthcare before and during pregnancy only aggravate the problem.
But although medical genetic research has lead to the treatment of these diseases and intends to ‘allow individuals and families to make decisions relating to lifestyle, fertility and planning,’ several ethical concerns continue to prop up. After all, genetic technology cannot still find a cure on the vast majority of genetic disorders.
Genetically affected children are also being 'classified' in education systems, and they may suffer a loss of self-esteem. Taking a genetic test can also reduce one’s chances for employment or for getting insurances. “One of the fundamental objections to genetic testing is that it constitutes an unacceptable degree of interference with Mother Nature. Some faiths spell out God's will in church doctrine… Rather than improving one's quality of life, taking a genetic test can often be the start of a string of closed doors.” (Genetic Testing - Issues, Arguments, Ethics and Morality)
Still, Dr. Ali prefers to pursue the subject. “Genetic technology gives information. And it is allowed in Islam, or from my personal understanding anyway. You are not interfering in the pregnancy of a woman and you are not aborting a child. You are just checking if the embryo has a disease or not and helping in conceiving a healthy baby.
“It is not being too smart. If you have the chance of preventing the conception of a baby with a serious illness then why not do it? What is the problem? We are not talking here about choosing an embryo with the right eye colour or height but illnesses where the child will almost certainly die after 2 or 3 years of birth by wasting gradually and dying in pain. So what is wrong with preventing the conception of a diseased embryo like that? This is science helping and improving people’s quality of life. You cannot hold on because you fear that somebody might use the technology in a negative way. And generally, genetic technology has benefited mankind immensely over the years, and will continue to do so, in all kinds of diseases including infections, heart diseases and diabetes.”
Terms You Should Know, as explained by Yousef Abdulrazzaq, Professor of Paediatrics at the UAE UniversityGenetic Treatment or Gene Therapy – “Basically, it is a technology that replaces genes. With this, you [would] know what and where the exact problem is, and facilitate genetic counseling.”
Genetic Technology – “It refers to the ability to demonstrate a specific gene that is missing, which could only mean that you have a genetic disorder, or where the mutation has occurred in a particular gene. It is not the only answer [to treat a genetic disorder], but it has been very beneficial, the best thing as of now. Of course, it is important that we have proper nutrition and exercise, but people have specific genetic disorders wherein the cells have to be replaced because it can affect the other organs in the body. There are very many other genetic disorders that you cannot do anything about despite of good nutrition and healthy habits. Genetic technology has also been used to produce drugs such as insulin, which we previously get from animals only.”
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