Center for Genomics and Health Care Equality – Genome Science Partnerships Core
Lead: Malia Fullerton
Team Members: Wylie Burke, Ben Wilfond, Holly Tabor, Kelly Edwards, Sue Trinidad, Amy Lemke, Dana Gold, Lorelei Straub
Create lasting collaborative relationships with UW Medical Genetics and Genome Sciences faculty and students.
Facilitate interdisciplinary conversation and policy development related to research ethics concerns in the genome sciences.
Synergistically intersect with on-going activities of other CGHE cores to bring researcher perspectives to bear on discussion and/or analysis of the challenges of genomic translation.
Established NWIGM Bioethics Core, including consultation service.
Conducted ethics-oriented needs assessment of Northwest Institute of Genetic Medicine (NWIGM) affiliated faculty and staff; initial findings presented at the June NWIGM All-Investigator Meeting. Complete analysis of the needs assessment is In Progress.
Partnered with the UW Institute of Translational Health Sciences (ITHS) to create database for research and clinical ethics consults; also worked to integrate Martha Horike-Pyne (NWIGM Research Coordinator) into the ITHS research coordinator core.
Partnered with Case Western Reserve CEER and the American Society of Human Genetics (ASHG), Public Responsibility in Medicine & Research (PRIM&R), and the Genetic Alliance in completion of the Genetic Research Review Issues Project (GRRIP) collaboration. Publications:
Lemke AA, Smith ME, Wolf WA, Trinidad SB. Broad data sharing in genetic research: Views of
Institutional review board professionals. IRB 2010. (in press).
Edwards KL, Lemke AA, Trinidad SB, Lewis SM, Starks H, Quinn Griffin MT, Wiesner GL, and the
GRRIP Consortium. Attitudes toward genetic research review: Results from a survey of
human genetics researchers. Public Health Genomics 2010. (in press)
Lemke AA, Trinidad SB, Edwards KL, Starks H, Wiesner G. Attitudes toward genetic research
review: Results from a national survey of professionals involved in human subjects protections. J Empir Res Hum Res Ethics 2010 Mar;5(1):83-91.
Host local interdisciplinary conversation focused on institutional certification procedures for dbGaP data submission and sharing; an initial meeting proposal presented to the ITHS Regulatory Advisory Committee was favorably received; currently planning for February 2011.
Establish quarterly interactive activity linking Public Health Genetic and Genome Sciences graduate students in discussion of current topics in genomic research translation; In Progress.
Solicit key faculty to begin identifying needs with respect to defined empirical project (current candidates: goals of data sharing in genomic research; return of research findings).
Host, in collaboration with the electronic MEdical Records & GEnomics (eMERGE) Network, a national policy discussion about challenges associated with whole genome approaches; planned for April 2011.