Preventative measures such as prenatal diagnosis and pre-implantation genetic diagnosis (PGD) are critical to avoid rare genetic disorders in children, speakers at a panel said yesterday
Screening essential to help save children's lives
DUBAI // Preventative measures such as prenatal diagnosis and pre-implantation genetic diagnosis (PGD) are critical to avoid rare genetic disorders in children, speakers at a panel said yesterday
The Prevention of Genetic Disease discussion was organised as part of the activities to mark Rare Disease Day at Children's City Creek Park in Dubai. The forum emphasised the importance of testing and the difficult decision that some parents may have to make if they are in a situation where it is acceptable to terminate the pregnancy.
"There are primary prevention methods through scientific advances in order to avoid genetic disorders that some families have struggled through," said Dr Aref al Khaldi, a consultant obstetrician and gynaecologist who is a PGD specialist. "What happens often is that a family does not know about the genetic disorder until the mother delivers the first child."
A religious scholar on the panel called on parents who have children with genetic disorders to be patient and accept God's will. However, he pointed out that families should be aware of preventative measures.
"Religious scholars in the past advised against marriages between relatives and used to call on people to marry from outside the family to improve the family's lineage," said Dr Sheikh Ahmad bin Abdul Aziz al Hadad, a grand mufti at the emirate's Department of Islamic Affairs and Charitable Activities. "It is important for fathers to consider this. Couples should undergo premarital tests before they decide to get married."
His advice came too late for Mohammad Hassan, whose son Hassan, not yet four, has a rare genetic disorder called mucopolysaccharidoses, or MPS, caused by the absence of a specific enzyme.
Hassan, whose parents are first cousins, was diagnosed when he was just one-year-old and has undergone multiple operations to improve his condition. His mother and father were not aware of his condition, which is inherited, until his birth.
Sheikh al Hadad pointed out that only exceptional cases should be dealt with by abortion. If a problem was diagnosed early in the pregnancy and it was determined that the child and parents would suffer from extreme hardship due to the disease, then terminating the foetus would be an option, he said.