The International Society for Prenatal Diagnosis (ISPD) has issued a new position statement on prenatal testing for Down syndrome. I have reported on what the statement says in the past several posts. Now, we turn a critical eye to the statement to provide an ethical assessment of it. What is most glaring is what is not stated in the new statement. I wonder if the ISPD has it’s own version of Voldemort.
If, like me, you have only a cursory familiarity about the Harry Potter series, then you may not catch the reference to “Voldemort.” Voldemort is the villain in the successful series of books and movies. Because he is so bad, the heroes refuse to refer to him by name. Instead, Voldemort is referred to as “he-who-must-not-be-named.”
I wonder, from reading the ISPD position statement, whether the ISPD has it’s own version of something “which-must-not-be-named.” To illustrate, here is a list of obligatory and descriptive statements from the ISPD position statement. When reading them, ask yourself at the end, “Why?”:
- Aneuploidy risk assessment is a component of a broad set of prenatal clinical services that should be offered from 9-13 weeks gestational age whenever possible.
- For women who come into care after the first trimester, risk assessment testing should be made available as soon as possible.
- First trimester aneuploidy screening (the ‘combined’ test) is more advantageous than second trimester screening (the ‘quadruple’ test) not only because information is available earlier in pregnancy but also because the screening has greater efficacy.
- Integrated screening can be offered when CVS is not available.
- [T]he Committee had some concerns about [NIPS] implementation and logistics … and the possible loss of the broader benefits associated with traditional screening approaches. However, it was concluded that this powerful new technology should be available to high risk women.
- We also acknowledge that … there will be regional variations in the adoption and use of [NIPS]. For example, in countries such as the Netherlands there is low utilization of existing serum and ultrasound screening protocols and this provides an additional impetus and greater advocacy for [NIPS] as a new paradigm.
Did you ask “Why?” at the end of each statement? Maybe putting it at the beginning and rephrasing a bit may be helpful, for instance:
- Why should aneuploidy risk assessment be offered from 9-13 weeks gestational age whenever possible?
- Why should risk assessment testing be made available as soon as possible for women who come into care after the first trimester?
- Why is it more advantageous to have aneuploidy screening earlier in the pregnancy than the second trimester?
- Why can integrated screening only be offered when CVS is not available?
- Why is NIPS a “powerful new technology” that “should be available to high risk women?”
- Why does the Netherlands having a low utilization of existing screening protocols provide an additional impetus and greater advocacy for [NIPS] as a new paradigm?
The ISPD statement either takes it as a given that readers will know why NIPS is “powerful technology” and why prenatal testing should be made available ASAP to every pregnant women up until the second trimester (but, note, no mention of the third trimester). I will have a follow up post analyzing “that-which-must-not-be-named.” Before doing so, though, I hope to benefit from your answers to the very basic question left unanswered in ISPD’s position statement on prenatal testing for Down syndrome–“Why?”
What do you think the answer is to the questions above? Why do you think the ISPD is silent in providing that justification in its statement on prenatal testing for Down syndrome?