Why do people marry their cousin
Consanguinity: The disease stays in the family
In Pakistan, four out of five rural marriages are between cousin and cousin. The devastating thing about it: Many of these marriages give birth to disabled children. The parents accept this as God given. There is seldom any explanation.
A dusty road leads to the small village of Khurram Dan. To the left and right are simple mud houses. Most of them only consist of a single room in which entire extended families live. The village of Shaheen Kausar consists of ten of these small houses. Her ten-year-old daughter Zainik Biki is sitting in one of these. Zainik is no ordinary girl, her face is much too big and too old for her body. Her eyes smile in a strange way. Saliva trickles out of her mouth. She can hardly talk. Sunra Zahar, an eleven-year-old girl, lives a few houses away. Sunra stares at her mother who is sitting next to her. Her face looks lifeless, somehow out of this world. "It was God's decision," one of the older women with henna-red hair suddenly shouts into the room.
Both girls are mentally handicapped. Many other children and young people in the small village and in the neighboring villages also suffer from various restrictions. Some are visually or hearing impaired, others are affected by muscular dystrophy. Cystic fibrosis and Down syndrome also occur. They all have parents who are closely related, because consanguinity between married couples is nothing special in Pakistan. In rural areas, around 80 percent of people marry first or second cousins. Spread across Pakistan, 56 percent of the 220 million inhabitants do so, according to the Pakistan Demographic and Health Survey from 2012-2013. The Islamic Republic thus has the highest incidence of consanguinity in countries with a similar tradition, higher than in India, Sri Lanka or Bangladesh, higher than in Turkey, Tunisia or the countries of the Middle East.
Marriage between close blood relatives is a cultural phenomenon, explains Dr. Haafeez-ur-Rehmann, who headed the anthropology department at Quaid-i-Azam University in Islamabad for several decades. Haafeez has carried out around 80 studies on the health and relationship between mother and child and the family in his country. Marrying within the closest family guarantees a partner with a similar socio-economic status, he says. One is familiar with the family and the customs of the other. Often there is already a good relationship with the in-laws. Divorce rates are also lower. “In our culture, love marriages are still not welcome. Even if the younger, more educated people are increasingly choosing it, ”explains the anthropologist.
What women like Shaheen Kausar, the mother of the girl with the too big face, don't know: The rate of genetic defects doubles when a first cousin and cousin marry. "If it is between two and three percent in a normal couple, children of close blood relatives have a four to six percent chance of suffering from a genetic defect," explains Dr. Salman Kirmani, professor of pediatrics at the renowned Aga Khan University in Karachi and one of the few geneticists in the country. "However, if both parents are proven carriers of a genetic defect, there is a 25 percent chance that your child will also be affected," adds the doctor, who has worked and researched for years at the Mayo Clinic in Minnesota.
Education is an exception
The majority of Pakistani are unaware of these probabilities. In the country, only 55 percent of the population can read and write. Only 36 percent of women and 46 percent of men attend secondary school at all. Education remains an exception, especially for girls. "And even if my patients have heard of the risks - they prefer marriage within the family," says Prof. Nabia Tariq, who heads the department of gynecology at Shifa College of Medicine in Islamabad. Nabia mainly treats families from Islamabad. The general public does not see them. What worries them, however, is the increased incidence of thalassemia, a genetic anemia in which a fault in the protein hemoglobin inhibits the transport of oxygen in the body. Only one percent of people worldwide are affected by thalassemia, compared to six percent in Pakistan. When asked whether the thought of abortion is allowed if the fetus is diagnosed early on, Nabia nods in agreement. "At our clinic, however, it is not allowed," she quickly adds, or only in those cases in which the mother's life is seriously threatened.
The pediatrician Kirmani has been offering a test that covers 300 diseases, including thalassemia, at his university in Karachi since Janamnesis showed a high probability of a genetic disorder. The samples are evaluated in the USA. The result is available after about two weeks. Tests like this one are an absolute novelty in the country. However, for most people, Karachi is a long way off, and the test costs of hundreds of US dollars can hardly be afforded by anyone. A whole family has to live on this amount for months.
Most people with disabilities in Pakistan lead a life of isolation. Although, according to a study by the World Health Organization from 2015, almost 16 percent of the population had to live with a disability, they can hardly be seen in the streets. Saima Aslam quickly found the reason: “We live in a very discriminatory society,” reports the 25-year-old, who suffers from muscular dystrophy. Saima's illness went undetected for many years. The doctors prescribed her pain medication, nothing more happened. When she could no longer walk, her parents started inquiring and came across Saaya, a disability organization in the heart of Islamabad. The organization tries to support disabled people in their everyday life. She gives instructions on how to live independently, recommends schools, and collects donations for aids such as electric wheelchairs. Above all - and that helped Saima a lot - educating her about disabilities. "Many doctors here don't know anything about it," says the young woman, and there is bitterness in her words.
Hardly any offers for the disabled
The country's government is unable to cope with the large number of disabled people. There are isolated centers in Islamabad that train disabled people and offer rehabilitation measures. There are 44 such centers spread across the country, according to the General Directorate for Special Education in Islamabad. 300 to 600 people between the ages of five and 15 who suffer from disabilities find their way there every day. As the population grows, so too will the number of disabled people, predicts an employee of the directorate-general who does not want to be named. When asked whether the Pakistani culture, the tradition of relatives' marriage, could be one of the reasons for the high number of disabled people in the country, the government official shook his head violently. Genetic factors rarely played a role: "The environment, the diet - that's where the disabilities come from," he says. Martina Merten
The author's research was made possible by a grant from the European Journalism Center and the Bill and Melinda Gates Foundation.
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