Issue

Context

The use of pre-natal medical tests is increasing alarmingly in India risking the life and health of both mother and foetus.

Background

• Pregnancy has been largely medicalised and made technology dependent and doctor-centered.
• Pregnant women and their families feel that they are often uninformed of the choices that lie before them as they consent to a battery of tests such as triple markers, 3-D ultrasounds and amniocentesis.
• Consenting to undergo a prenatal test means accepting the possibility (likely or remote) that your baby may be born with a disability of some kind.
• Pre-natal tests and scans can be useful in many ways and can offer critical information that can improve the care of mother and baby and also help some parents make an informed choice about the future of the pregnancy.

Ethical Concerns

The major ethical concerns in musicalized pregnancy are:

• Prenatal testing is tantamount to eugenics which involves an intentional engineering to eliminate or propagate particular traits in off-springs. It poses an ethical concern that shall we go for engineered babies.
• Should only ‘perfect’ or ‘healthy’ babies have the right to be born is another ethical concern in this regard?
  • Can we make space for a differently abled person within our family and in our society? When does a disability become unacceptable or intolerable? It is the public discussion of pre-natal sex determination that has ensured social (and legal) censure for the termination of female foetuses. Such a discussion has been by and large ignored on the subject of disability, and, in most cases, termination of foetuses with abnormalities has been accepted without reflection.
• Right to Abortion
  • Women should have the right to abortion. Abortion is a very personal decision and a woman may need to make that choice at a particular point in her life. She certainly needs no censure or judgemental gaze; instead she needs support and understanding.
  • According to Medical Termination of Pregnancy (MTP) Act termination of pregnancy is legal only up to 20 weeks of gestation. MTP should not restrict the termination of pregnancy by any particular week of gestation. They could legalise a cut-off at around 24 weeks. Most cardiac, neurological and kidney-related problems surface by then. But even after that cut-off, MTP could be offered on a case-to case basis – if a situation arises that is going to give a poor quality of life to a child, who may have to live from birth with multiple surgeries, and who may never really recover from an abnormality. Every such case should be referred to a committee which would take into account the opinions of an obstetrician, paediatrician, paediatric surgeon, lawyer, maybe a lay person too, perhaps another parent.
• Births have been highly medicalised and natural births are rarely practiced.
• Medical care for pregnant women generally impact fetuses, whether by design or as a side effect.
• The question of whether it is ever ethically justifiable to override a pregnant woman's autonomous refusal of medical intervention for the sake of the well-being of her fetus.

Case Study Niketa Mehta, Bombay, was 24 weeks pregnant when it was diagnosed that baby would have complete congenital heart blockage. The doctors did not abort her child as the MTP law disallows abortions after the foetus is 20 weeks old and Niketa approached Bombay HC which turned down her application. On 27th week of pregnancy, Niketa had a miscarriage. The debate on the right of woman to abortion started in India. In the Niketa Mehta case, a foetal 2-D echo, a colour Doppler that picks up any problems within the heart, was used. It is routinely used in patients who are diabetic, have a history of congenital heart disease in the family, or who already have a child with the problem. Or if the ultrasound scan at 18-19 weeks showed some abnormalities. But it can be done only at 23-24 weeks because it is only then that you can see things properly in the heart. Basically, after 20 weeks a lot of ultrasound and colour Doppler tests for certain heart, neurological and kidney problems are used. These tests are done to know in advance if the baby has a problem so that at birth the baby can be taken out quickly, and get in a cardiac surgeon immediately. Parents who have conceived after a long time are very keen to continue. So it does depend on how keen the parents are about that particular child and on continuing the pregnancy. But in the case of Niketa Mehta, the foetus had too many major heart abnormalities so the chances of the child having a normal, healthy life were very poor. Niketa Mehta case brought to the fore that MTP Act regulating abortion must leave space for particular cases which should be determined by independent committees to be set up at various levels. It also started the debate about the right of women to abortion at any time they want.

 

Various Prenatal Diagnosis Tests Dual Marker and Triple Marker Tests: These tests look at the level of certain hormones which are ‘markers’ associated with Down’s Syndrome. Ultrasound Tests: They are used extensively, four-five times in the pregnancy. Here we look for markers for certain abnormalities. In the case of Down’s Syndrome, for example, certain physical characteristics suggest that the foetus has this condition. With an ultrasound at 18-19 weeks we can pick up lots of information on structural problems.   Invasive Tests: These test the amniotic fluid, chorionic villus tissue or foetal blood. Sometimes we even do a skin biopsy of the baby. The other tests will give you a probable diagnosis – each one has its own proportion of false positives and false negatives. But when we test the tissue, we are actually looking at the genes, chromosomes, DNA, and this gives us a confirmatory result for certain genetic diseases.  Amniocentesis is an example of invasive test. One is the age of the patient. But we do the triple marker blood test on all patients. The risk of having a baby with Down’s Syndrome is higher as the woman gets older, but that doesn’t mean that a younger woman cannot have such a child.

Way Forward

• The pre-natal testing and technology should be used in a more thoughtful and ethical manner.
• Unfortunately in the Niketa Mehta case, the committee did not make a proper suggestion. There should be an independent committee at the Centre, not controlled by any medical college or by anyone else, and local committees at the state and city levels with a similar structure to determine the abortion case to case basis. Of course, it’s going to be a big task, but the time has come for us to deal with this.
• The International Federation of Gynaecology and Obstetrics (FIGO) guidelines clearly mention that if a child is severely handicapped and this is going to affect the child’s quality of life, then termination at any stage of pregnancy is recommended.
• Engineered babies practice must be banned as it is going to create a social catastrophe in the society.