Carlee Dawson, BA
ADWG ELSIconversations Session 2 - 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?
The Polygenic Risk Methods in Diverse Populations (PRIMED) Consortium (comprised of NIH program staff, affiliate members, investigators at 7 study sites, and a Coordinating Center) is funded by the National Institutes of Health to develop and evaluate methods improve the predictive capacity of polygenic risk scores for populations of diverse ancestry. ELSI activities in PRIMED are expected to explore the implications of integrating heterogeneous datasets and generating PRS data which may differentially impact individuals of diverse ancestry.
This survey asks participants to supply demographic information (including educational level, household income, and race), rate their familiarity with precision medicine terms, indicate their attitudes to precision medicine, identify sources of medical information and potential barriers to participation in research, and complete a measure of trust in research and researchers. The survey is available in Table 1 and in the supporting information of the linked publication.
This short (2–3 minute) animated video in one in a series of six, English language videos in this database that describe the concept and process of precision medicine research. The video series was developed for the VALUES Project, Patient Values and Attitudes about a Library of Knowledge: Uses of EHRs and Samples in Research, with health communications experts at Booster Shot Media. In the VALUES project, the videos were shown ahead of focus group discussions with a multilingual set of research participants about the use of their EHR data and biospecimens in precision medicine research.