Co-Principal Investigators

  • Eric Juengst (UNC)
  • Jennifer Fishman (McGill University)
  • Richard Settersten (Oregon State University)

“Personalized Genomic Medicine” (PGM) has become a banner which unites a very wide array of scientific, clinical, and commercial initiatives, from medical sequencing and pharmacogenomics research to medical school curricula, public health interventions, nutritional regimes, and direct-to-consumer “recreational” genome scanning. Across this spectrum, the virtues of PGM as a goal for translational genomic medicine and a “new paradigm for health care” are interpreted in different ways, with different implications for where this banner leads. In this study, researchers are examining the ways in which five sets of key interpreters understand PGM as a biomedical goal, in order to anticipate the ethical and social challenges they could provoke: individual scientists and labs who invoke the goal in NIH grant applications; the institutional sponsors and public policy proponents of the concept, including patient advocacy groups; PGM’s funding, regulatory, and editorial gatekeepers, medical educators and clinicians already working under this rubric, and the “early adopters” of PGM services amongst consumers and patients. There has been a good bit of discussion of the challenges involved in attempting to roll out PGM within the social context of our health care system. This study is aimed at exploring the challenges that could flow from the intrinsic axiological commitments of PGM itself, i.e. the values that drive and shape the enterprise.

Funding: R01 HG 005277, National Human Genome Research Institute, NIH

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