In Healthy Debate’s May 1st article Non-invasive prenatal testing and chromosomal microarray: changing the landscape of prenatal genetic testing by Jeremy Petch, Timothy Caulfield & Nan Okun, the following language was used in reference to Down syndrome and other prenatally-detected differences:
- Abnormality is used 9 times.
- Disorders is mentioned 9 times.
- Risk is utilized 7 times.
These are value-laden terms; words that express a negative bias towards fetuses who have Down syndrome or other genetic differences.
I am not expecting positive language when referring to Down syndrome, but I do expect value-neutral language. This is my expectation from journalists, and websites sponsored by health organizations, like Healthy Debate.
There are many value-neutral words that could have been chosen instead, like chance and difference. The biased language in this Healthy Debate article is outdated, and is not congruent with the trend towards ethical disclosure of diagnosis by clinicians.
(For best practice in language use and prenatal testing, see Ethically communicating a prenatal Down Syndrome diagnosis: a theoretical model describing its impact on pregnancy termination decisions by Zachary P. Hart. For another perspective on prenatal testing, read Ian Brown’s piece in the Walrus called Facing Difference).
My assertion is that my son is not, and never was, an abnormality. People with disabilities have been around since the beginning of time, and are a natural part of our human fabric.
Let’s continue to call out biased language in publications and on websites. Change is only going to happen if we speak up. This isn’t about being pro-choice or pro-life or politically correct or overly sensitive. It is simply about using language that is respectful of differences, and does not diminish the value of diversity in our world.