Patient and provider information & outcomes
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The eMERGE Network seeks to create a more informed discussion about genomic medicine research through research initiatives focused on education, regulation and consultation, as well as capture and assessment of process and health outcomes. Areas of focus include assessing the barriers and impact of return of genetic results on research participants, patients, family members, and healthcare providers.
Current research areas of interest:
- Impact of returning unsolicited genetic results on healthcare providers
- Impact of returning unsolicited genetic results on research participants
- Familial implications of returning clinical results
- Regulatory perspectives on sequencing research in clinical practice
- Assessment of targeted high-impact phenotype outcomes in both adults and pediatrics abstracted from the EHR
- Investigating economic impact of genomic medicine and sequencing
- Analysis of implementation outcomes for pharmacogenomics (PGx)
Completed initiatives:
- MyResults.org (decommissioned) (Lead: John Connolly): An informational resource equipped with knowledgeable material including in-depth drug overviews, explanatory videos, and frequently asked questions about genetic counseling, which can be used to improve critical health decisions.
- Public Attitudes toward Consent and Data Sharing in Biobank Research (Leads: Saskia Sanderson, Maureen Smith, Ingrid Holm): An experimental survey of 82,328 individuals from 11 healthcare systems in the eMERGE Network that assessed individual willingness to provide broad consent for sharing of biosamples and data. Sanderson SC, et al. Public Attitudes toward Consent and Data Sharing in Biobank Research. Am J Hum Genet. 2017 Mar 2;100(3):414-427