A team of researchers–more than a quarter of which had some connection with one or more noninvasive prenatal screening laboratory–conducted a study seeking to find out what decisions women would make if they understood prenatal testing better.
In a well designed study, 50% of the study group participated in a computerized, interactive decision-support guide about prenatal testing, Down syndrome, and other conditions, while the other 50% did not, instead receiving typical counseling that any other patient would.
What the study found was that the group that participated in the interactive guide had:
- A significantly higher knowledge score,
- Were less likely to have invasive diagnostic testing; and,
- More likely not to have any prenatal testing.
Some key quotes from the study:
The findings also show that this approach improved patient knowledge regarding prenatal testing and understanding of amniocentesis-related miscarriage and age-adjusted risk of Down syndrome, suggesting that this intervention resulted in more informed patient decision-making.
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This study’s finding that women who were randomized to the intervention group were less likely to undergo testing than those who received usual care adds support to the contention that women may not be receiving adequate counseling about their options. This underscores the need for clinicians to be clear that prenatal testing is not appropriate for everyone, and to present foregoing testing as a reasonable choice.
It should also be noted that every pregnancy carrying a child with a trisomy in the study was detected. And every one of those pregnancies ended in termination. (Perhaps a follow up study could be done of what decisions women make when adequately counseled post-testing).
Nevertheless, the study’s findings are key. Studies had found that under current counseling women were not making informed decisions about prenatal testing, some not knowing they had undergone it. But, to my knowledge, only one other study had shown that when expectant mothers understood prenatal testing better, fewer accepted it.
This study, being published in JAMA, and already featured on NPR, should be influential in improving how prenatal testing is administered. Some of the same authors had published articles that ultimately influenced ACOG’s decision to change its guidelines from offering prenatal testing for Down syndrome only to women over the age of 35 to now it being offered to all expectant women.
Hopefully, almost a decade after those earlier articles, and seven years since the guidelines changed, this study will have a similar effect. We have known for a long time that prenatal testing as currently administered too often does not result in informed decisions being made. Now, with this study, it further shows that when more informed decisions are made, fewer women accept prenatal testing.
Prenatal testing for Down syndrome is based on respecting a woman’s right to know. This article hopefully will influence practitioners to better counsel their patients and understand that a patients’ decision not to know is both a reasonable decision and one that should be respected.