Sampling Populations of Humans Across the World: ELSI Issues.

Source

Centre of Genomics and Policy, McGill University and Genome Quebec Innovation Centre, Montreal, Quebec H3A 1A4, Canada; email: bartha.knoppers@mcgill.ca.

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 sample collections can be grouped into longitudinal, diseasespecific, 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 studies. Expected final online publication date for the Annual Review of Genomics and Human Genetics Volume 13 is August 31, 2012. Please see http://www.annualreviews.org/catalog/pubdates.aspx for revised estimates.