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Changing the FMR1 Name
Published: 9 Apr 2022
… in “fragile X messenger ribonucleoprotein 1”
https://www.genenames.org/data/gene-symbol-report/#!/hgnc_id/HGNC:3775
The Use of “Retardation” in FRAXA, FMRP, FMR1 and Other Designations
The European Fragile X Network, which consists of seventeen different national fragile X associations, met in Wroclaw, Poland, November 2021, and agreed to work towards the eradication of the word “retardation” in regard to the naming of the Fragile X gene and protein.
The authors explain the three dangers that can arise with this labeling, including stigmatization and the inaccuracy and/or over-focus that causes the name to be misleading.
The use of the word “retardation” is highly stigmatic. Having that word as part of the names may invoke a range of negative emotions from families and individuals living with Fragile X and it invites potentially bullying or negative assumptions from their peers, medical providers, and members of society.
Including this term in the gene and protein name is misleading because it is inaccurate. All people walk around with the FMR1 gene and FMRP is a necessary protein. While the full understanding of the protein is still being developed, it is already known to assist the brain in making connections between cells through synapses, where communication between cells take place. FMRP is present all over the body, so isolating the description to the brain is inaccurate. The authors write, “This is similar to describing the brain as the dementia organ.”