Follow-up question on PID and CF

Question

In Dr. Christina Smaczny's answer to the question "Diagnostics during pregancy, and termination" [http://ecorn-cf.eu/index.php?id=65&tx_expertadvice_pi1[showitem]=2028&tx_expertadvice_pi1[search]=PID], the following passage can be found:

"Due to the methodical effort involved, this procedure [PID] should only be an option for couples for whom the risk of having a child with CF is at 50% and who will have to undergo IVF or ICSI treatment anyway."

Is this comment based on relevant sources, or does it (only) the author's personal point of view? From what I have understood so far, if both parents are CF carriers, the ethical review committee can be expected to approve PID at any rate, since the 25% likelihood is high enough.

To my previous understanding, the question to which the effort is justified could be decided individually by the parents and the treating doctor after dealing with the issue thoroughly.

Answer

Dear questioner,

The answer to the question "Diagnostics during pregancy, and termination" was provided by Dr. Christina Smaczny in collaboration with our gynaecology expert, Dr. Stücker, with whom we have also published a patient brochure called "Pregnancy with CF" (May 2012). Dr. Stücker was involved in answering this follow-up question as well.

The statement in the original answer from July 2012 does not contradict your comment. It is correct, though, that PID diagnostics [in Germany] are decided by means of consulting an ethical review committee. Whether a 25% likelihood and a previous child affected by CF (as was described in the original question of July 8, 2012) are sufficient to justify the effort, is left to the discretion of the respective committee. Therefore, such a decision might turn out in various ways.

A different method, which is less of an effort but bears the risk (less than 2%) of miscarriage, is chorionic villi biopsy, after which the pregnancy can be terminated in case of positive test results. [Translator's note: this applies to German regulations and may not be valid for other countries.]
Yours sincerely,
Dr. Christina Smazcny

14.12.2012