Sampling Populations of Humans Across the World: ELSI Issues

Annual Review of Genomics and Human Genetics, 13:395-413, 2012

21 Pages Posted: 11 Jan 2013

See all articles by Bartha Maria Knoppers

Bartha Maria Knoppers

McGill University - Centre for Genomics and Policy

Ma'n H. Zawati

McGill University - Centre of Genomics and Policy

Emily Kirby

McGill University - Centre for Genomics and Policy

Date Written: 2012

Abstract

There are an increasing number of population studies collecting data and samples to illuminate gene-environment contributions to disease risk and health.The rising affordability of innovative technologies capable of generating large amounts of data helps achieve statistical power and has paved the way for new international research collaborations. Most data and sample collections can be grouped into longitudinal, disease-specific, or residual tissue biobanks, with accompanying ethical, legal, and social issues (ELSI). Issues pertaining to consent, confidentiality, and oversight cannot be examined using a one-size-fits-all approach — the particularities of each biobank must be taken into account. It remains to be seen whether current governance approaches will be adequate to handle the impact of next-generation sequencing technologies on communication with participants in population biobanking studies.

Keywords: biobanks, disease-specific studies, longitudinal studies, residual tissue banks

Suggested Citation

Knoppers, Bartha Maria and Zawati, Ma'n H. and Kirby, Emily, Sampling Populations of Humans Across the World: ELSI Issues (2012). Annual Review of Genomics and Human Genetics, 13:395-413, 2012, Available at SSRN: https://ssrn.com/abstract=2190416

Bartha Maria Knoppers (Contact Author)

McGill University - Centre for Genomics and Policy ( email )

740 Dr. Penfield Avenue, Suite 5200
Montreal, Quebec H3A 0G1
Canada

Ma'n H. Zawati

McGill University - Centre of Genomics and Policy ( email )

740 Dr. Penfield Avenue, Suite 5200
Montreal, Quebec H3A 0G1
Canada

Emily Kirby

McGill University - Centre for Genomics and Policy ( email )

740 Dr. Penfield Avenue, Suite 5200
Montreal, Quebec H3A 0G1
Canada

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