Jennifer Fishman, "'Let's Pull These Technologies Out of the Ivory Tower': The Ethics, Values, and Politics of Participant-Driven Genomic Research."

Jennifer Fishman, "'Let's Pull These Technologies Out of the Ivory Tower': The Ethics, Values, and Politics of Participant-Driven Genomic Research."
Thursday, January 21, 2016 - 12:30

Jennifer Fishman, Associate Professor in the Biomedical Ethics Unit, Social Studies of Medicine Dept., McGill University (Montreal) presents:

"Let's Pull These Technologies Out of the Ivory Tower': The Ethics, Values, and Politics of Participant-Driven Genomic Research"

Lunch Workshop, Jan. 21, 2016, Cone 210, from 12:30-2:00.  Lunch will be provided, but due to limited seating please RSVP here by Jan. 15.

 

Abstract: In the last few years, the landscape of translational genomic research has been changing and is no longer confined to strictly academic research or institutionalized health care. New voices from advocacy organizations, direct-to-consumer companies, hybrid forms of university/advocacy/corporate research groups, and most recently ‘citizen scientists’ are shaping significant outgrowths in both research and transmission of biomedical knowledge. Drawing on data from interviews with leading figures in participant-driven genomic research (PDGR), this presentation will explore how these groups challenge and complicate traditional approaches to and the ethics of genomic research as the boundaries are challenged between experts and amateurs, funders and researchers, institutions and scientists. Results reveal that these groups, despite their diversity, share commitments to promoting alternative modes of housing, conducting, and funding genomic research, and, ultimately, sharing knowledge. The practices of PDGR therefore challenge existing approaches to research ethics as well, especially the regulation and oversight of human genetic information. As traditional genomic research evolves to embrace the ethos espoused by PDGR, these once anti-establishment sentiments are now poised to become compatible with the larger goals of the conventional genomic science community.   Follow the links for a .jpg or .pdf version of this flyer.

Prof. Fishman is the first speaker this year in our series on precision medicine, cosponsored by NC Biotech.  Other speakers include:

  • Jonathan Kahn  (April 6, lunch/workshop, 12:30-2:00, Cone 210).  Kahn is Professor of Law at Hamline University; for more on his work, see here.
  • Lynn Dressler (April 14, lunch/workshop, 12:30-2:00, location TBA).  Dressler is Director of Personalized Medicine and Pharmacogenomics at Mission Health in Asheville