16 December 2007
In a recent study entitled Break the Silence: HIV/AIDS Knowledge, Attitudes, and Educational Needs among Arab University Students in UAE, three medical students Fatima Alfaresi, Shamma Almazrouei, and Amal Muraddad, together with their faculty advisors Dr. Peter Barss, Associate Professor of the Department of Community Medicine of the Faculty of Health and Medical Sciences, Dr. Maria Ganczak and Dr. Fatma Al-Maskari found ‘alarming gaps in knowledge’ about HIV and AIDS among young Arab students of UAE University.
“The students had probably not had sufficient and effective teaching about HIV/AIDS. Some thought that being in the same room with a person with HIV, eating the same food, or having a mosquito bite could make them catch the disease,” recalled Dr. Barss. “We do not know the reason for this lapse. It could be cultural or, as in many countries, reluctance to report details about diseases that might affect tourism.”
Adapting a World Health Organisation Cross-National Study questionnaire, the researchers also learned that among the 5280 first year students of the UAE University they sampled in their survey, only a third knew that there is neither vaccine nor cure for HIV and AIDS. Relationships with PLH (People Living with HIV) were also dreaded, with some 53% wanting the patients to live apart from them.
Some 57% of the respondents, on the other hand, believed that teaching about these diseases in schools was inadequate, so they relied upon the media who sometimes give out ‘conflicting coverage of AIDS research,’ resulting in more muddled minds.
“The media may not be very effective in teaching younger people. They should focus on the major shortcomings that lead to increased risk of infection and to irrational fear of persons with HIV and AIDS, and assess their readers or audiences as to whether the information provided has been effective.”
While testing for HIV for all foreign workers and marrying couples is mandatory and religion prevents others from having premarital and extramarital relationships, there is still a need for further education and training. “We thought that better knowledge about HIV and AIDS could improve knowledge for self protection, diminish fear about being around people with the disease, and make young adults more compassionate and caring towards those who suffer from this illness,” Dr. Barss added as he explained the interventional study they later conducted involving some 2000 Grade 12 students in Al Ain and Abu Dhabi in collaboration with Dr. Michal Grivna and several teams of medical students.
“The first study we did allowed us to actually do something, and that is to give the students interactive workshops modeled on those developed by the World Health Organisation. High school students tend to be more responsive to close interactive communication rather than teaching with fancy slides.”
The UAE government is also increasing support for awareness campaigns on HIV and AIDS. “After we did our initial survey and then the intervention study, the government was actually interested to augment our efforts. One of our former colleagues, Dr Jamal Al Mutawa, now with the Health Authority of Abu Dhabi, has worked closely with a committee that will provide a comprehensive program for prevention and management of AIDS in the UAE. Other branches of the government are involved too. Hopefully, based on the results of the research, educational programs for HIV in schools will be improved.”
Dr. Barss also suggested considering an organization for the PLH. “I suppose there could be a way of having some sort of group for people who know that they are HIV+ so that they can choose a spouse within that group. The young patients may want still to have a home, a partner, since most will live many years with the infection. So how do you deal with that without spreading the infection?”
Currently, the prevalence of AIDS has increased since 1990 in the Arab region, with over half a million Arabs plagued with AIDS and about 68,000 newly infected with HIV. In the UAE, the Health Ministry has identified 466 local patients, and has deported foreign workers with HIV and AIDS.
What is HIV and what is AIDS
“HIV is a virus. It is a very small, invisible particle found in the body. One can get infected with HIV and not know it. The infected person may not even get sick at all for years. But, at some point, the virus may proliferate and harm a person’s immunity or resistance to other infections, making the individual prone to other diseases such as tuberculosis, pneumonia and others. HIV, by itself, does not get us sick until it harms our organs and allows us to be attacked by bacteria or other microbes. When it does, only then does the person become sick with AIDS.”
04 December 2007
For the first time, a geneticist from the UAE was named among the five women known for their researches in life sciences during the World Science Day last November.
Dr. Lihadh Al-Gazali, Professor of Clinical Genetics and Pediatrics in the Faculty of Medicine and Health Sciences of the UAE University, was given the 10th Annual L’Oréal-UNESCO Awards for Women in Science in the African-Arab States, ‘for the characterization of new hereditary diseases.’
Aside from the recognition, Dr. Al-Gazali would also receive $100,000 and would be officially honored on March 6, 2008 at the UNESCO headquarters in Paris by Koïchiro Matsuura, Director-General of UNESCO, and Sir Lindsay Owen-Jones, President of L’Oréal.
Proclaimed with her are V. Narry Kim, Assistant Professor at the School of Biological Sciences in Seoul National University in Korea for ‘elucidating several key steps in the formation of a new class of gene-regulating RNA molecules;’ Ada Yonath, Professor of Structural Biology at the Weizmann Institute of Science in Israel for ‘structural studies of the protein-synthesizing system and the mode of action of antibiotics;’ Ana Belen Elgoyhen, Professor at the Institute for Genetic Engineering and Molecular Biology in Argentina for ‘her contribution to the understanding of the molecular basis of hearing;’ and Elizabeth Blackburn, Professor of Biology and Physiology at the University of California in USA for ‘the discovery of the nature and maintenance of chromosome ends and their roles in cancer and aging.’
The L’Oréal-UNESCO Awards was created in 1998 by Prof. Christian de Duve, Nobel Prize Laureate in Medicine (1974), to acknowledge women who have played a role to the advancement of science. Every year, it announces five laureates from Asia-Pacific, Africa-Arab, Europe, Latin America and North America.
A woman of guts
But Dr. Al-Gazali’s success was not instantaneous and easy. She has to hurdle what a mother, a wife and a career woman has to face all at the same time. “I came from Baghdad, Iraq. When I was there, I noticed the children seem to have illnesses that no one can detect, so I became interested in genetic technology and studied it in England.”
“When I came to the UAE in 1990, it was basically only to expose my children to the Arab culture. But then I found out many other genetic diseases that are very unique in this population they were not even mentioned in Western lectures. Those have kept me going,” she added.
Currently, her research bordered on dysmorphology and recessive disorders in Arab populations. She also wrote and co-wrote about 130 peer-reviewed publications. “There was no genetic service when I came here. I started it myself, and we are still trying to build a laboratory for it. The problem only is the lack funds.”
“We have more experience than those abroad because we know firsthand about the genetic diseases here. Even the West cannot always diagnose these diseases. But then, it is just in the culture of the people here to seek medical treatment outside the UAE.”
To those who disagree with the progress of genetic technology, Dr. Al-Gazali can only say that most of their researches have helped patients anyway. “People my have differing opinions about it, but the aim of the scientists is to help the patients. Most of our researches have helped our patients.”
Dr. Al-Gazali also advises other people still shaping their careers to ‘work and persevere.’ “I always tell my children – I have two girls and a boy – to work and persevere. If something fails, go on. You may have failed at that time but it does not mean that you would fail in the end. Never give up.”
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 University
Genetic 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.”