Newfoundland and Labrador: it's all in the genes
CMAJ 2000;163(3):321
Newfoundland and Labrador is noted for its stark beauty, friendly folk and small gene pool, with the latter making the province an ideal place for genetics research. Now the provincial government is moving to regulate that type of research, likely by forming a provincial research ethics board.
"It is our plan to put in place policies and standards around genetic research later this year," says Health and Community Services Minister Roger Grimes. "There has ... been some research by people who studied the DNA of families without following up with them as to the outcome. It is important that the province move forward with policies and standards regarding all genetic research in Newfoundland and Labrador."
Although Health Canada's Food and Drug Act regulates the establishment and operation of clinical trials, it does not have the authority to regulate genetic studies. Newfoundland and Labrador commissioned Dr. Verna Skanes, former assistant dean of research and graduate studies at Memorial University, to prepare a report on issues arising from the commercialization of this research. She concluded that an ethics board with representatives from the legal community, medical profession and public is necessary. "It seems obvious that the province needs a clearly articulated policy for research ethics review of all human research projects," she says. In preparation for such a policy, the health minister says the department "will review the experiences of countries like Iceland."
The residents of Newfoundland and Labrador descended from approximately 20 000 people, who originally settled in the province in the 1800s. The limited immigration since then makes it easier for medical researchers to trace genetic diseases. — Donalee Moulton, Halifax
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