Social acceptance - Capsules

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Bartha Maria Knoppers is a Canadian lawyer specializing in the ethical aspects of genetics, genomics and biotechnology. In addition to being a world-renowned expert in this area, she holds the Canada Research Chair in Law and Medicine and heads the McGill University Centre of Genomics and Policy.

She has made significant contributions to the field of biobanks, from their design to their optimization. Her expertise and authority in these matters is globally recognized. Ms. Knoppers founded CARTaGENE , a bank of biological samples and health data from 20,000 Quebecers. The project, which is both an investigation into public health and a population-based biobank, represents an invaluable resource for researchers working in personalized medicine, genomics, public health and epidemiology. She is also the principal investigator of P3(Public Population Project in Genomics and Society), an international non-profit organization that promotes cooperation among researchers, the harmonization of biobank samples and data and their optimized use.

What is a Biobank?

A biobank, like the Génome Québec and CIUSSS Saguenay-Lac-Saint-Jean Biobank, is a treasure trove of genetic information. It is a storage facility for the safe conservation of biological samples (e.g. blood, plasma, DNA, human tissues, urine). These samples are preserved with the help of cutting-edge technology and used by researchers who, for instance, might be studying the genetic basis of certain diseases to better understand the relationship between health and the environment. The data contained in a biobank can also help authorities gain a clearer picture of the health status in a given community, leading to a more efficient use of taxpayers’ money (e.g. with targeted prevention and promotional programs). All biobank samples are stored in a systematic manner and assigned a barcode to protect the privacy of individual donors.

Bartha Maria Knoppers

"Recent progress in genomics, whether in assisted human reproduction, the use of stem cells, cloning or pharmacogenomics, presents ethical challenges that society must take into consideration. But given the state of advances in this sector, the issue today is how to best communicate a real understanding of the existing knowledge and potential applications to society. When genomics is an integral part of society, it creates as many responsibilities as it does rights for citizens, researchers and decision makers."

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