Times of India spreads false information on Down syndrome prenatal testing

What’s become an annual event, the Times of India has published yet another mistake-riddled report on prenatal testing for Down syndrome. 

Sushmi Dey reports on non-invasive prenatal screening (NIPS) scheduled to launch in India. It’s a hot mess from the very first sentence:

Now, it may be easier to detect and prevent the birth of children affected with chromosomal and genetic disorder, which account for 30-40% of mental and social handicaps. 

As accurate as NIPS may be, it remains a screening test and never definitively detects a chromosomal condition. And, the method of preventing the birth of children affected with that condition has not changed what. so. ever.

A revolutionary screening method — non-invasive prenatal testing — is set to be launched in India later this week which will allow safer and definite detection of such disorders in pregnant woman.

This is the type of reporting that overstates the accuracy of NIPS which leads women to make irrevocable decisions about their pregnancies based on false information. NIPS never provides a “definite detection.”

To appreciate the scale on which this misinformation can have tragic consequences, Ms. Dey estimates the live birth prevalence of Down syndrome in India, a nation of more than a billion:

Currently, the incidence of Down syndrome is 1:800, which means approximately 32,000 babies with Down syndrome are born every year (the birth rate of India is 25.6 million births). 

That is more than six times the average total births of children with Down syndrome in America (less than 5,000).

A new study, conducted at Sir Ganga Ram Hospital in New Delhi, showed that non-invasive prenatal testing qualifies as an “advanced” screening test. The study, conducted to assess the utility of the test, also depicts it as a safer screening option as compared to existing testing methods which have a risk of abortion. 

I don’t know what Dey means by calling it an “advanced” screening test. If she means, it’s reliability is only recognized by the majority of professional medical organizations among women who already have an increased chance, then she would be right. But, the very next sentence suggests Dey misunderstands NIPS as being equivalent to diagnostic tests like chorionic villus sampling and amniocentesis: NIPS is not diagnostic so it is not comparable to CVS or amnio.

“Non-invasive technology is safer because it can be done by taking the mother’s blood instead of putting a needle to take out the fluid as is done in invasive procedure, where there is a risk of abortion of the fetal,” says Dr IC Verma, head, department of medical genetics, Sir Ganga Ram Hospital. 

Dey’s report continues and should be read in full as the flow of mistakes continues (like how it is not “cell free fetal DNA” that is tested). But I’ll end my critique at this paragraph.

The quote by Dr. Verma and Dey’s immediate preceding statement that NIPS is safer than diagnostic testing because NIPS does not have the risk of abortion of diagnostic testing begs the question: how exactly will NIPS prevent the birth of children with Down syndrome?

Dey never mentions that all prenatal tests do nothing to prevent the tested-for condition. The only way the number of children born with Down syndrome are reduced by prenatal testing is if mothers use that information to selectively abort their pregnancy.

Dey presumes this choice will be made by expectant mothers. Moreover, her reporting contributes to the societal expectation–the normative effect–that a woman receiving a prenatal test result for Down syndrome will abort. And, Dey’s false characterization of NIPS as definitive and equivalent to diagnostic testing contributes to the misunderstanding on the accuracy of NIPS. Coupled with her presumption that women will abort, this is a bad combination of women misunderstanding the accuracy of their NIPS results and then terminating their pregnancy because that is the expected decision.

Dey’s spreading of misinformation is beyond unfortunate. It will lead to tragic, unethical decisions. Perhaps, Dey would have taken great care with the accuracy of her reporting if she had considered the other impact that NIPS will have.

The more common “genetic flaw” detected by prenatal testing

The headline for Dey’s piece reads:

Prenatal testing to detect genetic flaws to be launched

The most common “genetic flaw” selected against through abortion in India is not Down syndrome. Or Edwards, Patau, or any of the number of other genetic conditions commonly considered disabling.

The most common chromosomal condition that Indian mothers choose to selectively abort is the one that Dey has herself: female.

The disappearance of Indian girls has been labeled “gendercide.” And, while NIPS can test for Down syndrome, it can also return results on the baby’s sex. There are 32,000 babies born with Down syndrome in India, but there are tens of millions of pregnancies carrying a baby girl each year.

How different would Dey’s reporting have been if she had appreciated that this same technology will return results where still, because of the societal bias against daughters, NIPS will also feed the presumption that women will abort and try to have a son in a subsequent pregnancy.

Maybe if she had, then she would have taken greater care to report what is true about NIPS:

• It remains a screening test.
• It still has false positives and false negatives.
• It simply provides information, and further information should be provided about the tested-for condition.
• Each decision should be the mother’s and respected, including a decision to decline testing or continue their pregnancy after a NIPS-positive result.

Because for most of those test results, more Indian mothers won’t be deciding to terminate because the NIPS result reported their child had Down syndrome. More will be selectively terminating because the NIPS result reported their child had the same condition as Ms. Dey: XX.

Ms. Dey is on Twitter @sushmidey and the Times of India is @timesofindia. I will be sending the link to this post and asking for a correction. Feel free to send a message of your own.