In a recent publication, Bert Boyer and colleagues make a strong case for involving indigenous research participants in the discourse, planning, process and dissemination of any pharmacogenetic studies impacting them.
It's a matter of justice, the authors say. The study of how drugs and genes interact is quickly growing, bringing the possibility of safely tailoring drug prescriptions to meet an individual's particular ability to metabolize them. To not identify all possible genetic variants found in different populations limits the provision of safe and effective drugs to the medically underserved, the authors argue.
But gaining access to an Alaska Native or American Indian community could be difficult given the “legacy of mistrust, derived from traditional research” and must be overcome. The authors cite a couple of egregious studies as examples.
The core values implicit to community-based participatory research call for scientists to make a long-term commitment to communities, to collaboratively set research priorities, build local capacity to address health priorities, return results in a culturally understandable format, and revisit communities to maintain a lasting partnership, the authors said.
Boyer B.B., D. Dillard., E.L. Woodahl, R. Whitener, K.E. Thummel and W. Burke. (2011) Ethical Issues in Developing Pharmacogenetic Research Partnerships With American Indigenous Communities. Clinical Pharmacology & Therapeutics. Volume 89 Number 3. March 2011. doi:10.1038/clpt.2010.303.
Arctic seals have been found dead or sick with blisters, lesions and hair loss, causing concern among numerous agencies, scientists, managers, Native hunters, and Arctic and Bering Strait communities.
The North Slope Borough and others have submitted a report on the seals to the NOAA Working Group on Marine Mammal Unusual Mortality Events. Todd O'Hara, CANHR's veterinarian researcher, is a member of the group.
The group will review the material to decide if the sickness will be considered an Unusual Mortality Event, and if so, then develop a response and investigation plan.
The National Oceanic and Atmospheric Administration has posted a webpage explaining the seals' sickness and outlining safety precautions. The page contains several graphic photos of diseased seals.
These links explains the Working Group on Marine Mammal Unusual Mortality Events, of which Todd O'Hara is a member.
and more information is available at