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.
Does prenatal preparation justify prenatal genetic testing for many different conditions? Although pregnant people/families, clinicians, and patient advocates all talk about preparation, it likely means something very different for different people and different conditions. The goal of this project is to identify and analyze the components of preparation following a prenatal genetic finding; to see how the meanings of preparation compare and differ between these different stakeholders; and to better understand how a prenatal genetic finding may help improve outcomes.
PREPARE (PREparation: Actions and REsults) has been funded by the National Institutes of Health. Our team speaks to clinicians, patient advocacy groups, and parents who receive genetic results about their pregnancy or their baby. We are exploring 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 a genetic condition.
For more information about the PREPARE study, see prepare-study.net.