11 Health L.J. 89 (2003)
Beyond the Rhetoric: Population Genetics and Benefit-Sharing

handle is hein.journals/hthlj11 and id is 91 raw text is: Beyond the Rhetoric: Population Genetics
and Benefit-Sharing
Lorraine Sheremeta* & Bartha Maria Knoppers*'
1. Background
Information derived from the Human Genome Project (HGP) promises to
inspire an array of future innovations with profound societal benefits.' Population
genetic research is now viewed as a necessary next step in the evolution of research
based on the human genome.2 It is anticipated that projects will be developed in
which the DNA from thousands of research subjects will be linked to medical
records and to genealogical data; these complex databases will provide much
needed insight into the etiology and prevention of many complex human diseases.
Analyses of data procured in large-scale population genetic studies will enable
researchers to gain a better understanding of the gene-environment interactions that
are now implicated in cardiovascular diseases, metabolic disorders, musculoskele-
tal diseases, neuropsychiatric diseases and cancer. The completion of the sequenc-
ing phase of the HGP provides researchers:
with an unparalleled opportunity to advance our understanding of the
role of genetic factors in human health and disease, to allow more
precise definition of the non-genetic factors involved, and to apply this
insight rapidly into the prevention, diagnosis and treatment of disease.
... [T]he time is right to develop and apply large-scale genomic
strategies to empower improvements in human health, while anticipat-
ing and avoiding potential harm.3
'Lorraine Sheremeta is a Research Associate at the Health Law Institute, University of Alberta, Edmon-
ton, Alberta.
** Bartha Maria Knoppers is Canada Research Chair in Law and Medicine, Professor, Facult6 de droit,
and Senior Researcher at the Centre for Public Law (CRDP), Universit6 de Montr6al, Montr6al.
This research is supported in part by Genome Prairie, Genome Quebec, Genome Canada, the Quebec
Network of Applied Genetic Medicine (RMGA) and the Alberta Law Foundation.
'Francis S. Collins, Eric D. Green & Alan E. Guttmacher, A Vision for the Future of Genomics
Research (2003) 422 Nature 835.
2 Christopher Mathew, Postgenomic Technologies: Hunting the Genes for Common Disorders (2001)
322 BMJ 1031; Jocelyn Kaiser, Population Databases Boom, From Iceland to the U.S. (2002) 298
Science 1158; Aravinda Chakravarti, Population Genetics - Making Sense Out of Sequence (1999)
21 Nat. Genet. (Suppl.) 56.
3 Supra note 1 at 840. To facilitate the translation of genome-based knowledge into health benefits, the
National Human Genome Research Institute has set six grand challenges that require it to: (1) develop
robust strategies for identifying the genetic contributions to disease and drug response; (2) develop
strategies to identify gene variants that contribute to good health and resistance to disease; (3) develop
genome-based approaches for prediction of disease susceptibility and drug response, early detection of
illness, and molecular taxonomy of disease states; (4) use new understanding of genes and pathways to
develop powerful new therapeutic approaches to disease; (5) investigate how genetic risk information is

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