July 7, 2017: Ethics and the Precision Medicine Initiative: Reflections from Working on the Central PMI IRB

Speakers

Nancy Kass, ScD, Phoebe R. Berman Professor of Bioethics and Public Health, Johns Hopkins Berman Institute of Bioethics, Johns Hopkins Bloomberg School of Public Health

Gregory J. Jurkovich, MD, Professor and Vice Chair, Department of Surgery, at the University of California, Davis

Topic

Ethics and the Precision Medicine Initiative: Reflections from Working on the Central PMI IRB

Keywords

Pragmatic clinical trial; Clinical Research; Precision Medicine; Central IRB

Key Points

  • The values of the All of Us program are openness, access, engagement, and transparency
  • The PMI program is research; the IRB has focused on voluntariness, not exaggerating the promise of precision medicine, and translation
  • PMI can help answer questions that take large cohorts or involve hard-to-find subgroups. It has the power to do good
  • The ethics stakes of the Precision Medicine Initiative are high

Discussion Themes

Participation in the All of Us Research Program will be a catalyst for innovative research programs and policies

Participants will be partners in the program, and trust will be earned through robust engagement and full transparency

How will the program achieve truly diverse enrollment and engage target populations?

Cultural sensitivity is paramount, and a good start is diversity in photos/images without stereotypes

For More Information

Read more about the NIH Precision Medicine Initiative at https://allofus.nih.gov/.‚Äč

Tags

#pctGR, @JohnsHopkindsSPH, @bermaninstitute, @PCTGrandRounds, @Collaboratory1, @precisionmedicine, #centralIRB