In October 2025, will I attend the 4th International Workshop on Klinefelter Syndrome and other supernumerary sex chromosome conditions. My poster and abstract are titled ‘An extra X comes with extra worries? Prenatal genetic testing: information needs and language used by new members in a Facebook group on Trisomy X’
The idea for the poster came from my observations as a moderator of a Facebook group. The group is called Triple X Syndrome/ Trisomy X. As a moderator, I let new members in. I had the impression that receiving NIPT results was often a reason to become a member. Not all of the parents understood that NIPT only indicates a higher likelihood. Some wrote ‘we received a NIPT diagnosis’. As a scientist, I was interested in quantifying my observations. That was the start of the project.
This is the abstract for the conference book.
This file contains more information on the group and the group analysis. To protect the privacy of our group members, the tables with the data for analysis are not presented here.