Knowledge of the condition being tested for is increasingly acknowledged as an important factor in prenatal testing and screening decisions. An analysis of the way in which family members living with an inheritable condition use and value this knowledge has much to add to debates around whether and how this type of
knowledge could be made available to prospective parents facing screening decisions. This paper reports on in-depth interviews with sixty-one people (conducted 2007-9), with a genetic condition in their family, Spinal Muscular Atrophy (SMA). Many participants described their intimate familial knowledge of SMA as offering them
valuable insights with which they could imagine future lives. Other participants, however, found themselves trapped between their experiential knowledge of SMA
and their (often) competing responsibility to maintain the wellbeing of their family. Still others established a ‘hierarchy’ of knowledge to rank the authenticity of different family member’s accounts of SMA in order to discredit, or justify, their decisions. This paper highlights the way in which experiential knowledge of the condition being tested for cannot be unproblematically assumed to be a useful resource in the context of prenatal testing and screening decisions, and may actually constrain reproductive decisions
