Down syndrome
Last updatedWhat to know
Down syndrome is a condition in which a person is born with a full or partial extra copy of a certain chromosome, named for British scientist John Langdon Down, who is credited with publishing the first accurate description of someone with the condition in 1866. According to the Centers for Disease Control and Prevention, Down syndrome occurs in about 1 in 700 babies. Down syndrome is characterized by developmental delays of varying degrees and specific features such as a short stature, “flattened face,” and “almond-shaped eyes that slant up,” according to the Centers for Disease Control and Prevention. Trisomy 21, in which each cell in the body has an extra copy of chromosome 21, is the most common form of Down syndrome; the terms Down syndrome and Trisomy 21 are sometimes used interchangeably, though it’s important for accuracy to verify the type of Down syndrome being discussed. It’s also important not to assume someone’s diagnosis based on appearance or any other characteristic. Cognitive delays due to Down syndrome range from mild to severe, and each individual’s experience is unique; accurate coverage will reflect the individual’s lived experiences rather than assuming their abilities, intellect, or any other aspect based on diagnosis.
Prenatal testing exists for Down syndrome and certain other genetic conditions, though critics including some medical experts argue this represents a contemporary form of eugenics, as the pregnant person may choose to have an abortion if the fetus has a high likelihood of having Down syndrome or other genetic anomaly. (Iceland, for instance, has very few babies born with Down syndrome due to the prevalence of prenatal screening and the decision to undergo abortion in the vast majority of cases where a high likelihood of Down is discovered.) Given the deeply personal and nuanced nature of the decisions around prenatal testing and abortion, careful coverage will ensure motivations are not assumed and that individuals are not shamed or stigmatized for personal medical choices.
According to the National Down Syndrome Society, “There is no definitive scientific research that indicates that Down syndrome is caused by environmental factors or the parents’ activities before or during pregnancy.” People with Down syndrome and their caregivers may experience social stigma and discrimination, and coverage should be careful to avoid implying “blame” for the condition. For balanced coverage, it’s important to speak to those with Down syndrome, not just their caregivers. It’s also important in media coverage to feature a wide range of perspectives, and ensure coverage doesn’t lean too heavily on “inspirational” narratives about achieving something “despite” a disability or stigmatize those with disabilities.
Additional resources
- ‘I’m proving everyone wrong’: Actors with Down syndrome enjoying new era of media representation (CBC)
- Trailblazing triathlete isn’t letting Down syndrome prevent him from becoming an Ironman (Washington Post)
- About Down Syndrome (National Down Syndrome Society)
Summary
Down syndrome is a condition in which a person is born with an extra copy of a certain chromosome, characterized by developmental delays of varying degrees and certain physical features like short stature and flatter faces. People with Down syndrome and their caregivers may experience social stigma and discrimination, and coverage should be careful to avoid implying “blame” for the condition or only speaking to caregivers of those with Down syndrome rather than the individuals themselves. It’s also important in media coverage to feature a wide range of perspectives, and to take care that coverage does not lean too heavily on “inspirational” narratives about “overcoming” or stigmatize those with disabilities. Prenatal testing exists for Down syndrome and certain other genetic conditions, though critics including some medical experts argue this represents a contemporary form of eugenics. Given the deeply personal and nuanced nature of the decisions around prenatal testing and abortion, careful coverage will ensure motivations are not assumed and that individuals are not shamed or stigmatized for personal medical choices.