Families and clinicians sometimes differ on what kinds of information are most important to them beyond that basic phenotype. The chart below, based on research by Katie Berrier, shows the top ten priorities identified by parents who receive a prenatal diagnosis and genetic counselors delivering a prenatal diagnosis. Clinicians tend to value genetic and health information while families are more concerned about available supports and social implications; however, they both value the importance of printed/written materials.
Historically, clinicians have tended to favor what is called a “medical model” of disability which frames disabilities in the context of the medical problems associated with them. While these medical issues are important to address for health reasons, there is a social model of disability which suggests that many of the challenges associated with disabilities can be addressed with better support, services, and social attitudes.
In comparing the information viewed as most important by genetic counselors and parents, you can see the interplay of both of those models.
Sheets KB, Best RG, Brasington CK, Will MC. Balanced information about Down syndrome: What is essential? Am J Med Genet A. 2011;155:1246–1257