The French State records data of pregnant women without their approval !

The French Ministry of Health established a system to record data of the 700,000 pregnant women by using only one criterion: the probability of the child to have Down syndrome !

In order to protect women, children and healthcare practitioners, 21 parties have contested this data recording system: the Jérôme Lejeune Foundation, the collective against handiphobia, healthcare practitioners, and women who have already done prenatal screening.

On November, 17th 2017, the French State Council announced a mixed decision.

  • The Jérôme Lejeune Foundation succeeded to have the decree of May, 11th 2016* organizing the data recording system of Down syndrome partly annulled.
  • However, the data recording system is maintained on a national level. The French Agency of Biomedicine (ABM) will keep centralizing the private data of women without their approval.


To break the code of silence which is currently lingering over this data recording system for pregnant women and babies with Down syndrome, please share our campaign !


This data recording system seriously harms the freedom and dignity of many people.

This data recording system harms women’s privacy
This data recording system stigmatizes and discriminates children with Down syndrome
This data recording system harms doctors’ independence
This data recording system increases State eugenics






*Decree of May, 11th 2016 modifying the decree of June, 23rd 2009 establishing the good practice guidelines in terms of Down syndrome prenatal screening and diagnosis with the use of serum markers from the mother – published in the Official Journal of May, 18th 2016.


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