Since the dawn of prenatal testing and selective abortion, critics and commentators have wondered whether Down syndrome will disappear from society. Experience this year suggests that it may now be happening.
Before Non-Invasive Prenatal Screening (NIPS) was introduced, Dr. Brian Skotko authored an article wondering whether Down syndrome will “disappear.” Now, being a doctor, he did not mean that there would be any genetic treatment that somehow eradicated the effects of the additional 21st-chromosomal material. Rather, as NIPS poses no risk to the mother and delivers a highly accurate assessment of the chances of having a child with Down syndrome, Dr. Skotko wondered whether this would dramatically increase the uptake of prenatal testing and, if past practice held, the number of abortions would also increase. Through this method, Down syndrome would “disappear” in the sense that while Down syndrome is a naturally occurring condition, and pregnancies will continue to have fetuses with Down syndrome, babies simply will not be born alive with Down syndrome, instead being selectively terminated following a prenatal test result.
Dr. Skotko’s question is justified given what already had been reported about the impact of prenatal testing.
A survey of Down syndrome births in three regions globally: Western Europe, North America, and Australia, found that, overall, there are more abortions of children with Down syndrome than babies that are born. Another study found that in France and Switzerland, more than 80% of all pregnancies with Down syndrome are aborted. You read that right. While I have tried to set the record straight on the out-dated 90% termination rate for Down syndrome in America, in those countries it is higher than 90%. For almost every pregnancy prenatally diagnosed with Down syndrome in France or Switzerland, it is terminated. And, because almost every pregnancy in those countries undergoes prenatal testing, then, over 80% of all Down syndrome pregnancies are terminated. Graphs available through a European-wide tracking database show that the number of Down syndrome live births are dwindling to almost nothing.
In North America and the United Kingdom, live births are reported as holding steady with historical numbers. But the United States reports are only current as of 2007, the first year ACOG recommended that all women be offered prenatal testing. In the international study, it predicts that as prenatal testing is accepted more, the number of terminations will also rise. And, just last week, I received information that suggests this may already be happening.
A staff member with a local parent support organization contacted me in my capacity as chairman of the Informed Decision Making Task Force. The IDM TF is a group of individuals, many of whom are active in their local parent support organization, engaged in medical outreach and trying to provide balanced, accurate information about Down syndrome. This staff member asked if groups were seeing a dramatic fall-off in the number of babies being born in their local area. In her years of welcoming new parents, this organization typically experienced 2-3 babies being born each month; since the start of 2013, she reported they had only welcomed 1 family. So, whereas in years past, she would have welcomed at a minimum 10 new families at this point of the year, she had welcomed only 1–a 90% reduction.
Now, this experience by this one local group could be explained in a variety of ways. Because more parents might be receiving the diagnosis prenatally, perhaps they had done on-line research on their own and had prepared themselves for their child’s birth such that they did not feel they needed to reach out to the local support organization. Or, perhaps there had been a change over in hospital staff members who normally would refer patients to the group, and the new ones had not been trained yet. But, this is unlikely. This group is very engaged in medical outreach with good ties to their local medical community to receive referrals–as evidenced by the high number they had been experiencing before the start of this year.
At the same time, other groups who also have representatives on the IDM TF report no real fall-off in the number of births they have experienced in 2013. They do not report growth, but not a fall-off either–consistent with the previous studies showing the United States simply holding steady. So, perhaps this one group is just having a lull.
Or, perhaps, it’s already happening: perhaps Down syndrome is already starting to disappear.