Canadian experiences carrying out Genetic research with aboriginal communities Laura Arbour MD University of British Columbia Training for researchers: How to conduct Research in AI/AN Communities Fort Yates, ND June 16 th , 2005
Indications for liver transplant in BC over 10 year period. 25% of those referred for transplant for PBC were First Nations Leading indication (8 times) for liver transplant in First Nations People of BC British Columbia: population 3.9 million 171,000 are aboriginal (about 4%)
Conclusive evidence that 50-75% of spina bifida, can be prevented with supplemental vitamins containing folic acid. Estimated that 20% of all birth defects, in addition to SB, could also be prevented with the use of vitamins supplements (Botto et al AJMG, Part C (Semin.Med Genet) 125C:12-21, 2004)
Public health efforts to encourage all women of childbearing years to take a multivite containing 400µg of folic acid
But only 15-30% of women adhere to this
Mandatory fortification of grain products (flour, cereals) commenced in Canada, US in 1998 (increasing intake by about 100 mcgs/day).
Estimated RR for birth defects in Inuit children from Baffin Island and Arctic Quebec –the baseline Arbour et al, 2004 International Journal of Circumpolar Health 63(3) 251-265 Based on chart review of 2567 live births 1989-1994
Meeting with numerous stake-holders, community, health care providers (GPs, MOH, nurses, dieticians, CHRs) Nunavut research institute, NTI, ITK “Is this important to you? Would you support the work being done?”
Advisory board struck
Nunavut Research Institute licensing, Hamlet offices
Regular updates (participants), visits, discussions about research and any other topic Brochures “Healthy hearts: happy babies” Students are involved
Every community, we talk to CHRs, nurses, doctors, Inuit nursing students..we listen to them…what ideas do they have. Research is always being updated.