The PREPARE study
Recent advances in prenatal genetic testing have renewed concerns from disability advocates and right-to-life movements that prenatal diagnoses serve primarily to enable elective terminations. Yet many women and families say they choose prenatal testing for a very different reason: preparation.
Is the concept of prenatal preparation, despite the powerful work it does in justifying prenatal genetic testing, still a “collective fiction”? Although used by pregnant women, clinicians, and patient advocates, preparation may well mean something quite different for all of them. Using Down syndrome as a case study, the objective of this project is to identify and analyze the components of preparation following a prenatal genetic finding; to identify congruence and dissonance in the models of preparation used by different stakeholders; and to better understand the health and behavioral impacts of a prenatal genetic finding and of the ways it is delivered and supported.
PREPARE (PREparation: Actions and REsults) is in the planning stages, with a funding application under consideration by the National Institutes of Health. If funded, the study will include research on clinicians, patient advocacy groups, and (potential) parents of children with Down syndrome. It will explore the concept of preparation as a rationale for prenatal testing, and focus on the similarities and differences between the actions that clinicians, support groups, and parents believe are most valuable in preparing for a child with Down syndrome.
For more information about the PREPARE study, see prepare-study.net.