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Video

Genomics and Data Sovereignty: Policy and Deliberative Approaches for Engaging Indigenous Communities

ELSI Friday Forum • May 14, 2021 Nanibaa’ Garrison, PhD, moderates the session with panelists Stephanie Russo Carroll, DrPH, MPH, and Justin Lund, MA, discussing Indigenous data sovereignty and…
  • Indigenous Communities
  • Alaska Native/American Indian Health Research
  • genomic data sharing policy
  • data sovereignty

News

Why it is Important to Call Out Racist Language Amongst Our Professional Peers

Recently, on a panel at a conference of a medical professional society, the president of the society used a racist term that is an ethnic slur used to refer to Asians. The speaker did not publicly…
  • racism

Publication

Operationalizing the CARE and FAIR Principles for Indigenous data futures

Scientific Data
Carroll, Stephanie Russo, Herczog, Edit, Hudson, Maui, Russell, Keith, Stall, Shelley

Publication

Power sharing, capacity building, and evolving roles in ELSI: The Center for the Ethics of Indigenous Genomic Research

Collaborations
Blanchard, Jessica, Hiratsuka, Vanessa, Beans, Julie A., Lund, Justin, Saunkeah, Bobby, Yracheta, Joseph, Woodbury, R. Brian, Blacksher, Erika, Peercy, Michael, Ketchum, Scott, Byars, Christie, Spicer, Paul

Publication

Fostering ethical, legal, and social implications research in tribal communities: The Center for the Ethics of Indigenous Genomic Research

Journal of Empirical Research on Human Research Ethics
Hiratsuka, Vanessa Y., Beans, Julie A., Reedy, Justin, Yracheta, Joseph M., Peercy, Michael T., Saunkeah, Bobby, Woodbury, R. Brian, O'Leary, Marcia, Spicer, Paul G.

Publication

The CARE Principles for Indigenous data governance

Data Science Journal
Carroll, S. R., Garba, I., Figueroa-Rodríguez, O. L., Holbrook, J., Lovett, R., Materechera, S., Parsons, M., Raseroka, K., Rodriguez-Lonebear, D., Rowe, R., Sara, R., Walker, J. D., Anderson, J., Hudson, M.

Publication

Deliberations about genomic research and biobanks with citizens of the Chickasaw Nation

Frontiers in Genetics
Reedy, Justin, Blanchard, Jessica W., Lund, Justin, Spicer, Paul G., Byars, Christie, Peercy, Michael, Saunkeah, Bobby, Blacksher, Erika

Publication

An Alaska Native community’s views on genetic research, testing, and return of results: Results from a public deliberation

PLoS ONE
Hiratsuka, Vanessa Y., Beans, Julie A., Blanchard, Jessica W., Reedy, Justin, Blacksher, Erika, Lund, Justin R., Spicer, Paul G.

Event

Ethical Challenges in Novel Gene Therapies for Sickle Cell Disease

Join us for our next ELSI Friday Forum on June 11, “Ethical Challenges in Novel Gene Therapies for Sickle Cell Disease.”  Pilar Ossorio, JD, PhD, will moderate the session with panelists Liza-Marie…

Collection

Game of Bones: Power, Ethics, and Emerging Technology in Paleogenomics Research

The field of paleogenomics is exploding. More ancient genomes were sequenced in 2019 than in all of history. According to The Economist, in 2018, oil was the most traded global commodity. However, in…
  • paleogenomics
  • ancient DNA
  • emerging technology
  • Indigenous Peoples
  • archaeology