In an era where genomic medicine promises to transform healthcare with cutting-edge treatments and personalized care, it is crucial to ensure these advancements are accessible to all, particularly historically marginalized populations. In collaboration with Black in Genetics (BiG), this forum discussed the challenges hindering access to genomic medicine for marginalized groups, with a special focus on Black populations. The talks discussed how to include diverse ethnic groups to enhance research designed to identify novel genetic risks and gene network modifications.
PROJECT NARRATIVE More efficient ways for people to make decisions about having genetic testing are needed. We will compare use of a chatbot to standard genetic counseling in helping healthy adults in a primary care setting make informed choices. If similar, this intervention can expand access to genetic testing to achieve greater equity.
PROJECT NARRATIVE The goal of the proposed research is to investigate how clinical genomic sequencing impacts families of pediatric patients. This research will develop an empirically informed framework of normative values important to families of pediatric patients, including ethical, legal, and social implications (ELSI), which will then be used to elicit preferences for features of sequencing from a nationally representative sample of parents in the US.
Carlee Dawson, BA
Date: May 6, 2022
Question: What is the most important information, conceptually, for clinical genetics professionals to do their jobs well? Is the information always necessary; if not, when is it critical vs. extraneous? When is it potentially harmful?
Goal: Distill the most relevant information among population descriptors that serves a purpose in the clinical curation pipeline, or other clinical genetics work