NEW DELHI :
The Union health ministry has requested the Central Board of Secondary Education (CBSE) to teach genetic diseases, particularly blood disorders such as thalassemia and sickle cell anaemia in schools.
In August, the ministry had drafted a policy, which was finalized earlier this year, to increase awareness about the genetics and prevention of hemoglobinopathies—a group of disorders and diseases that affect red blood cells.
“We are in talks with the CBSE and state governments for inclusion of a chapter in the curriculum. Delhi government may adopt this soon which may prove a trend-setter for other states," said a health ministry official on condition of anonymity.
“Statistics of genetic diseases in India are worrisome. The number is increasing every day. We have to start the awareness right from the schools, catching them young. The thalassemia cases that once used to be 7,000 per year in India have now gone up to 10,000-15,000," said Vinita Srivastava, national consultant, blood cell in the health ministry.
High costs and availability of blood and medicines is a perpetual problem for such parents of affected children.
The policy also proposes screening of students for various genetic disorders to bring down the disease burden.
“Carrier screening could also be undertaken for high school and college students. Premarital and pre-conception carrier screening should be instituted with appropriate genetic counselling. All subjects screened would be given a card indicating their status, whether normal, carrier or diseased through systems of colour coding," the policy document stated.
Under the policy, premarital screening for likely genetic disorders will be voluntary, while antenatal testing, or testing in the first three months of pregnancy, will be compulsory.
Genetic tests may detect mutations at the chromosomal level, such as additions, deletion or rearranged chromosomal materials, or even subtler abnormalities such as a substitution in one of the bases that make up the DNA. Genetic tests have diverse purposes, including screening for genetic disease in newborns, children and adults. Several genetic conditions can be detected by genetic screening such as cystic fibrosis, fragile X syndrome, Tay-Sachs disease, spinal muscular atrophy and down syndrome.