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The AMGGI project is a unique initiative to
systematically identify genes and genetic
mutations underlying familial, monogenic
disorders arising in populations and
communities throughout the Atlantic
Provinces. The research program links human
genetic research efforts in Newfoundland,
based at Memorial University, with
activities encompassing the three Maritime
Provinces and centred at Dalhousie
University. The interdisciplinary project
team, lead by molecular geneticists at
Dalhousie and Memorial, brings together
recognized experts in clinical
ascertainment, gene discovery, genetic
diagnostics, genetic counseling, health
economics and human ethics. The
comprehensive program, from ascertainment
and discovery to genetic diagnostics and
community outreach, leverages regional
health care resources through the active
recruitment of community-based clinicians to
assist in identifying disorders, families
and individual cases for the discovery
effort. The AMGGI project will generate
tangible socioeconomic benefits by improving
health care and disease management options
for individuals, families and communities in
Atlantic Canada burdened by relatively
isolated but devastating monogenic
disorders, and will serve as a model for
human genetic research internationally.
The population of
Atlantic Canada is internationally
recognized as one of the world’s most valued
human populations for gene discovery and
related medical genomics research. The AMGGI
project is a Canadian health research
initiative that makes use of the region’s
human population structure and history, as
well as the quality of the health care
system, to provide a streamlined process to
identify genes that have a major impact on
health. This new knowledge will be
transferred to local health care providers
to improve clinical management. Thorough
evaluation of the impact of genetic
information on the health and wellbeing of
patients, families and communities and
economic costs/benefit analysis will be an
integral part of the research program. The
AMGGI project will make maximal use of the
Atlantic Canada’s natural human genomics
resource for efficient, cost-effective and
significant medical breakthroughs.
An integral component of the AMGGI proposal
is the innovative study of the potential
impacts of genetic discovery on the
provision of health care services, including
assessing the wellbeing of patients and
families who are affected by genetic
conditions and who are the most likely
consumers of new genetic technologies. Our
GE3LS (Genomics, Ethics,
Environment, Economic, Legal and Social
Issues) team will examine the values,
beliefs and practices of physicians and
genetic counselors who are the potential
providers of genetic services, as well as
those of patients, families and communities
in which these services are offered. Thus
the GE3LS team on the proposal
will assess the genetic burden of disease at
a variety of levels (personal, community,
provincial, federal) and along a number of
dimensions (ethical, legal, psychological,
sociological, and economic) in a
well-defined population. The team includes
regional directors of medical diagnostic
laboratories as part of the unprecedented
commitment to facilitate knowledge transfer
to the health care system.
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