"We're Going to Book This for You": Threats to Informed Decision-Making in the Down Syndrome Determination Experience

To identify and describe threats to informed decision-making at key junctures of the Down syndrome (DS) determination experience.

We conducted 32 narrative interviews with 42 participants (10 couples and 22 individuals). Participants relayed their stories of receiving their child's or a prospective child's DS determination. Interviews were recorded, transcribed verbatim, and analyzed thematically.

We identified the following 5 threats to informed decision-making: routinization of screening, screening for reassurance's sake, equating an openness to screening with an openness to testing and termination, misunderstanding and miscommunicating about probability, and a lack of up-to-date, accurate, neutral information.

The results contribute to an existing body of literature on the DS determination experience with a uniquely Canadian lens. The threats outline how well-intended counselling can ultimately undermine reproductive autonomy and informed decision-making. With knowledge of how these seemingly harmless behaviours threaten informed decision-making and reproductive autonomy, care providers can modify their counselling to lessen their impact.