Literature DB >> 22404491

Sampling populations of humans across the world: ELSI issues.

Bartha Maria Knoppers1, Ma'n H Zawati, Emily S Kirby.   

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.

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Mesh:

Year:  2012        PMID: 22404491     DOI: 10.1146/annurev-genom-090711-163834

Source DB:  PubMed          Journal:  Annu Rev Genomics Hum Genet        ISSN: 1527-8204            Impact factor:   8.929


  16 in total

1.  Big Data in medical research and EU data protection law: challenges to the consent or anonymise approach.

Authors:  Menno Mostert; Annelien L Bredenoord; Monique C I H Biesaart; Johannes J M van Delden
Journal:  Eur J Hum Genet       Date:  2015-11-11       Impact factor: 4.246

2.  The challenge of informed consent and return of results in translational genomics: empirical analysis and recommendations.

Authors:  Gail E Henderson; Susan M Wolf; Kristine J Kuczynski; Steven Joffe; Richard R Sharp; D Williams Parsons; Bartha M Knoppers; Joon-Ho Yu; Paul S Appelbaum
Journal:  J Law Med Ethics       Date:  2014       Impact factor: 1.718

Review 3.  Next-Generation Sequencing and the Return of Results.

Authors:  Bartha Maria Knoppers; Minh Thu Nguyen; Karine Sénécal; Anne Marie Tassé; Ma'n H Zawati
Journal:  Cold Spring Harb Perspect Med       Date:  2016-10-03       Impact factor: 6.915

4.  Biobanking: The Melding of Research with Clinical Care.

Authors:  Maureen E Smith; Sharon Aufox
Journal:  Curr Genet Med Rep       Date:  2013-06

Review 5.  Challenges in biobank governance in Sub-Saharan Africa.

Authors:  Ciara Staunton; Keymanthri Moodley
Journal:  BMC Med Ethics       Date:  2013-09-11       Impact factor: 2.652

6.  Community engagement for big epidemiology: deliberative democracy as a tool.

Authors:  Rebekah E McWhirter; Christine R Critchley; Dianne Nicol; Don Chalmers; Tess Whitton; Margaret Otlowski; Michael M Burgess; Joanne L Dickinson
Journal:  J Pers Med       Date:  2014-11-20

7.  Genomics and infectious disease: a call to identify the ethical, legal and social implications for public health and clinical practice.

Authors:  Gail Geller; Rachel Dvoskin; Chloe L Thio; Priya Duggal; Michelle H Lewis; Theodore C Bailey; Andrea Sutherland; Daniel A Salmon; Jeffrey P Kahn
Journal:  Genome Med       Date:  2014-11-18       Impact factor: 11.117

Review 8.  Impacts of a biobank: Bridging the gap in translational cancer medicine.

Authors:  Tushar Vora; Nirav Thacker
Journal:  Indian J Med Paediatr Oncol       Date:  2015 Jan-Mar

9.  An ethics safe harbor for international genomics research?

Authors:  Edward S Dove; Bartha M Knoppers; Ma'n H Zawati
Journal:  Genome Med       Date:  2013-11-22       Impact factor: 11.117

10.  Newspaper coverage of biobanks.

Authors:  Ubaka Ogbogu; Maeghan Toews; Adam Ollenberger; Pascal Borry; Helene Nobile; Manuela Bergmann; Timothy Caulfield
Journal:  PeerJ       Date:  2014-07-31       Impact factor: 2.984

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