Not sure whether you have seen this article.
http://www.thenews.com.pk/Todays-News-9-160665-First-cousin-marriages
First-cousin marriages by Dr A Q Khan
Random thoughts
Last year I wrote on the topic of thalassaemia, to which I received many positive reactions. Because of the importance of this disease and its relationship to first-cousin marriages, I am venturing to give some more information on the topic. Please keep in mind that I am not a medical doctor and write merely for the general public’s information.
In our society first-cousin marriages are very common. A result of this is that many genetic disorders are passed on from one generation to the next. And this causes a difficult life for the children stricken by thalassaemia as a result. At the same time, the parents go through a lot of mental agony, to say nothing of the financial consequences they must face in the form of treatment for the children. Marriages between first cousins and close family members is a largely ignored subject and one which many do not want to face or even talk about.
Though a lot of technical literature is available, as well as general information from Wikipedia and many other electronic sites, newspapers are still the cheapest and most readily available source of dissemination. Here I would like to discuss some of the articles that I have found or that have been sent to me.
1. There was a very useful and informative article in a Pakistani newspaper last year, in which the writer, Mozaffir Ali, pointed out the dangers and serious repercussions of marriages between cousins. This custom seems to be taking ever deeper roots in conservative communities and the number of children afflicted with genetic disorders has grown.
He quoted the research done by Dr M Aslam Khan of the University of Health Sciences, Lahore. This indicates that there is a more than a 50 percent higher risk of inherited disorders like thalassaemia, deafness, blindness, mental disorders, diabetes and muscular disorders in children born to first cousins. Though more common in first-cousin partners, marriages within the same community also carry a higher risk.
According to Dr Aslam Khan’s research, more than 80 percent of all parents in Pakistan are first cousins, seven percent are related by blood, about six percent belong to the same caste and only about four percent marry outsiders. In many countries, first-cousin marriages are forbidden and children of these marriages stand at 20 percent risk of having genetic problems.
Dr Aslam Khan carried out his research in Lahore, Gujranwala, Sialkot and Shaikhupura districts, in which 9,503 parents were involved. Of these, 44.1 percent were first cousins, 14.7 percent were relatives and 41.2 percent were unrelated. He found that, in the case of thalassaemia, 44 percent of the afflicted children were from first-cousin marriages. Of the 206 families interviewed in Lahore, 89 percent were first cousins. Out of the 720 children born to them, 318 were afflicted with thalassaemia. Many of those who don’t have the disease are carriers and can pass it on to their offspring.
Considering these figures, it seems imperative that a law be enacted to make pre-marriage screening of couples compulsory in order to indicate what risk they carry of passing on defective genes and what precautions they should take. To this end, Sen Abdul Haseeb Khan is working hard at getting such legislation passed by the Sindh Assembly (with the help of Dr Saghir Ahmad, the provincial minister of health) and by the National Assembly.
2. Another important article was published by Rebecca Lefort in The Daily Telegraph on Feb 12. She carried out research in the Pakistani community in the United Kingdom. She found that more than 700 children were born with genetic diseases every year to parents who were first cousins.
These children were ten times more likely to inherit disorders than the general population. These included infant mortality, birth defects, learning difficulties, blindness, hearing problems and metabolic disorders. Unfortunately, despite mounting evidence, the Pakistani community was not willing to acknowledge the risk, take preventative measures or, sometimes, even discuss the issue.
3. In response to my columns on thalassaemia, Dr Gul Rahman, chairman of the Breast and Children Cancer Institute in Peshawar, sent me an excellent article on thalassaemia, in particular on its relevance to Pakistan. He pointed out the serious dangers involved in first-cousin and intra-family marriages. I owe him an apology for not having reacted earlier to his email, which I received on June 28, 2012.
4. In an article this month, Shahid Hussain, quoting Dr Tahir S Shamsi, writes that thalassaemia is the most common genetic disorder in Pakistan and a major public-health problem. With medical advances and improving medical facilities, children with the disease live longer now than they did in the past, and more problems develop as they get older.
There are many informative and useful articles available on this subject and I believe that, if reproduced in a booklet and freely and widely distributed, public awareness on how to control thalassaemia and other genetic disorders could be greatly enhanced.
Mian Shahbaz Sharif has taken a highly commendable step for the eradication of thalassaemia by setting up a task force under Programme Coordinator Dr Muhammed Navid Tahir, under the Punjab Thalassaemia Prevention Programme (PTPP tel. 042-99238926). They offer the following free services:
a) Awareness programme; b) Extended family screening of carriers; c) Genetic counselling; d) Pre-natal screening; e) Prenatal diagnosis
Currently the PTPP is active in 16 districts in Punjab and this service will be extended to the whole of the province within three years. They currently have offices at Sir Ganga Ram Hospital, Lahore; Holy Family Hospital, Rawalpindi; Children’s Hospital, Multan; Victoria Hospital, Bahawalpur; DHQ Hospitals in Shaikhupura; and in Gujranwala, Faisalabad, Vehari, Khanewal, Lodhran, Muzaffargarh, Jhelum and Toba Tek Singh.
In addition to the PTPP, the following are some of the organisation active in health care and often offering free services:
a) Pakistan Thalassaemia Welfare Society, Rawalpindi (telephone: 051-5780749); b) The thalassaemia Federation of Pakistan/Kashif Iqbal Thalassaemia Centre, Karachi (telephone: 021-34981190); c) Al-Mustafa Welfare Society, Karachi, where free treatment (including blood transfusions) is available for thalassaemia patients. It is run by former federal minister Haji Hanif Tayyab.; d) The Pakistan National Heart Association (Panah), Rawalpindi (telephone: 051-9270642); e) Seyal Medical Centre, Multan (telephone: 061-4782499). Dr Abdul Rashid Seyal, the head of the centre, is a US-trained specialist who can be contacted by email at
arseyal@gmail.com; f) Medical Centre, Bahria Town, Rawalpindi; g) Thanks to the activities of a large number of free medical centres run by the Memon, Chinnioti, Punjabi Saudagaran, Bohri, Ismaili and other communities, millions of poor and less well-off patients are receiving medical care all over the country.
May Allah shower His blessings on all these people for the noble work they are doing. Ameen.