Abstract
Approximately 2.5 million Americans have an intellectual disability (ID). ID was commonly referred to as “mental retardation” until 2007 when one of the main organizations providing support for individuals with ID, the American Association on Intellectual and Developmental Disabilities (formerly known as the American Association on Mental Retardation) changed its name. The federal government followed suit in 2010 when Rosa’s law was enacted. This legislation required removal of the term “mental retardation” from several federal laws. The purpose of our study was to assess the language used by genetic counselors regarding ID. We recruited genetic counselors through the NSGC listserv for participation in an online, anonymous survey, which focused on terminology used by genetic counselors and their perceptions regarding the terminology used by patients and other healthcare providers. A total of 280 respondents completed the survey. Many respondents (56%) reported using the term “intellectual disability” often or all of the time, but 37% reported using the term “mental retardation” often or all of the time in their counseling sessions. Almost one-third (32%) of respondents reported that they choose terminology based on cultural appropriateness and 28% indicated that they choose terminology that patients are most familiar with. More than 50% of respondents reported that patients show a preference for the term “special needs,” while 18% reported that patients use “intellectual disability” often or all of the time. Over half (56%) of study participants reported that geneticists and non-geneticist physicians use the term “mental retardation” often or all of the time and only 3% reported that their workplace has a policy regarding terminology usage. Our findings demonstrate that there is still considerable variability in the terminology used by genetic counselors regarding ID. Future research efforts should be focused on exploring the meaning/impact of this terminology for patients and their families.