In our interviews with family support groups, we’ve learned that preparation means different things for different conditions and different families. We’re presenting some of our early findings this week at the American Society for Bioethics and Humanities 2021 conference.
A new post on The DNA Exchange observes that, while a genetic diagnosis may seem like the end of a journey for a clinician, it’s really the beginning of a lifelong journey for individuals and families. And, even more importantly, that journey isn’t entirely defined by clinical diagnoses or encounters. … More Diagnosis begins a journey
The guiding question of the PREPARE study is: What helps parents prepare for the birth of a child with a genetic condition? And the answer is: we just don’t know for sure. Surprisingly, given how often we talk about prenatal testing as giving parents information that will help them prepare, there are simply no studies … More Does prenatal testing help parents prepare?
It may surprise you to learn that even for Down syndrome, the condition most commonly tested for during pregnancy, there are no standard clinical recommendations for how to “prepare” for a birth and a child with the condition. … More Preparing for birth
The PREPARE Study 