indianexpress.com :: In search of the ‘perfect’ child, couples go for genetic counselling

In search of the ‘perfect’ child, couples go for genetic counselling

PALLAVI SINGH

Posted online: Thursday, January 10, 2008 at 0000 hrs IST

New Delhi, January 9
Wary of a child with a clubfoot or facial and oral deformities? If counsellors for genetic diseases at leading city hospitals are to be believed, most prospective parents certainly are.

Dr Seema Thakur, a consultant in genetics at Sir Ganga Ram Hospital, says: “Some couples are quite adamant. They prefer abortion even if there is a slight deviation from normal. There is an obsession, especially in India, with the ‘perfect child’.”

And this is where genetic counselling comes in. A relatively new medical process, it helps patients or relatives, at risk of an inherited disorder, discover consequences and nature of the disorder, and the probability of developing or transmitting it.

Doctors say “obsessed” with a perfect child, many undergoing counselling seek abortion of pregnancies that are at risk of even minor deformities.

Take, for instance, Sushma Gupta (name changed on request). An IT professional whose unborn child was diagnosed with a cleft palate, a deformity caused by abnormal facial development, she went for an abortion. “It was painful but it is better to keep the child out of the way before the child is ridiculed for no fault of his/her own,” she says.

Dr I C Verma, HoD, Genetic Studies, Sir Ganga Ram Hospital, says while malformations like cleft lip or a cleft palate can very well be treated through surgery, many couples want nothing short of a perfect child. He says the rise in awareness level is the prime reason behind the rising numbers seeking genetic counselling. “Often, we get couples with queries like the effect of X-ray on the child in the womb,” Dr Verma says.

More abortions in early marriages
Dr Thakur pegs the number of her patients with abortion request for minor defects at 60 per cent. But she says much of those decisions vary from case to case: “If it’s, say, a delivery at an advanced age, or if the mother is a heart patient, they do not mind a child with a defect.”

But couples with an early marriage, or those who already have children, prefer a child with no trouble, she says. “For example, when genetic risks are high, the desire to have a healthy child and to avoid danger to oneself, family and society are frequently in conflict,” Dr Thakur says. “Although most counselling sessions end well, with zero or very little chances for abortion, people in the high-risk category are left with only the options of prenatal diagnosis and abortion.

“And, if required, artificial insemination and gene therapy.”

Dr Vimarsh Raina, senior consultant in molecular biology at Apollo Hospital, says Indian families are “too emotional” to go for abortion.

“The biggest challenge of genetic counselling is helping families cope with emotional, psychological and medical consequences of genetic diseases,” Raina says. “It is difficult to assess the efficacy of genetic counselling, for there is no end-result like cure.

“But it’s always a very hard decision to abort a child — such decisions in Indian families are taken collectively.”

‘Shortage of trained docs in genetic medicine’
Sir Ganga Ram Hospital carries out maximum number of tests for genetic diseases in the country, Dr I C Verma says. The number of “anxious” couples, he says, is about 5 per cent of the patients he treats. “Though a small number, it has to be seen in the context that there is a shortage of doctors trained in genetic medicine.”

The first genetic register began at the Department of Paediatics in AIIMS. But Ganga Ram Hospital, which treats about 3,000 patients a year and conducts 1,200 tests for genetic disorders, has a dedicated department to the cause.

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In search of the ‘perfect’ child, couples go for genetic counselling PALLAVI SINGH Posted online: Thursday, January 10, 2008 at 0000 hrs IST New Delhi, January 9 Wary of a child with a clubfoot or facial and oral deformities? If counsellors for genetic diseases at leading city hospitals are to be believed, most prospective parents certainly are. Dr Seema Thakur, a consultant in genetics at Sir Ganga Ram Hospital, says: “Some couples are quite adamant. They prefer abortion even if there is a slight deviation from normal. There is an obsession, especially in India, with the ‘perfect child’.” And this is where genetic counselling comes in. A relatively new medical process, it helps patients or relatives, at risk of an inherited disorder, discover consequences and nature of the disorder, and the probability of developing or transmitting it. Doctors say “obsessed” with a perfect child, many undergoing counselling seek abortion of pregnancies that are at risk of even minor deformities. Take, for instance, Sushma Gupta (name changed on request). An IT professional whose unborn child was diagnosed with a cleft palate, a deformity caused by abnormal facial development, she went for an abortion. “It was painful but it is better to keep the child out of the way before the child is ridiculed for no fault of his/her own,” she says. Dr I C Verma, HoD, Genetic Studies, Sir Ganga Ram Hospital, says while malformations like cleft lip or a cleft palate can very well be treated through surgery, many couples want nothing short of a perfect child. He says the rise in awareness level is the prime reason behind the rising numbers seeking genetic counselling. “Often, we get couples with queries like the effect of X-ray on the child in the womb,” Dr Verma says. More abortions in early marriages Dr Thakur pegs the number of her patients with abortion request for minor defects at 60 per cent. But she says much of those decisions vary from case to case: “If it’s, say, a delivery at an advanced age, or if the mother is a heart patient, they do not mind a child with a defect.” But couples with an early marriage, or those who already have children, prefer a child with no trouble, she says. “For example, when genetic risks are high, the desire to have a healthy child and to avoid danger to oneself, family and society are frequently in conflict,” Dr Thakur says. “Although most counselling sessions end well, with zero or very little chances for abortion, people in the high-risk category are left with only the options of prenatal diagnosis and abortion. “And, if required, artificial insemination and gene therapy.” Dr Vimarsh Raina, senior consultant in molecular biology at Apollo Hospital, says Indian families are “too emotional” to go for abortion. “The biggest challenge of genetic counselling is helping families cope with emotional, psychological and medical consequences of genetic diseases,” Raina says. “It is difficult to assess the efficacy of genetic counselling, for there is no end-result like cure. “But it’s always a very hard decision to abort a child — such decisions in Indian families are taken collectively.” ‘Shortage of trained docs in genetic medicine’ Sir Ganga Ram Hospital carries out maximum number of tests for genetic diseases in the country, Dr I C Verma says. The number of “anxious” couples, he says, is about 5 per cent of the patients he treats. “Though a small number, it has to be seen in the context that there is a shortage of doctors trained in genetic medicine.” The first genetic register began at the Department of Paediatics in AIIMS. But Ganga Ram Hospital, which treats about 3,000 patients a year and conducts 1,200 tests for genetic disorders, has a dedicated department to the cause.