title: Sampling populations of humans across the world: ELSI issues.
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.
authors.affiliation: Centre of Genomics and Policy, McGill University and Genome Quebec Innovation Centre, Montreal, Quebec H3A 1A4, Canada. bartha.knoppers@mcgill.ca
authors.forename: Bartha Maria
authors.initials: BM
authors.lastname: Knoppers
authors.forename: Ma'n H
authors.initials: MH
authors.lastname: Zawati
authors.forename: Emily S
authors.initials: ES
authors.lastname: Kirby
mesh_terms: D022126:Access to Information; D030561:Databases, Nucleic Acid / Q000941:ethics / Q000331:legislation & jurisprudence; D030661:Genetic Privacy / Q000941:ethics / Q000331:legislation & jurisprudence*; D014644:Genetic Variation; D015894:Genome, Human; D059014:High-Throughput Nucleotide Sequencing; D006801:Humans; D007258:Informed Consent / Q000941:ethics / Q000331:legislation & jurisprudence; D038622:Internationality; D011153:Population; D017422:Sequence Analysis, DNA; D014015:Tissue Banks / Q000941:ethics / Q000331:legislation & jurisprudence