Literature DB >> 19630558

Stewardship of human biospecimens, DNA, genotype, and clinical data in the GWAS era.

Stephen J O'Brien1.   

Abstract

An ethical quandary is emerging over custodianship of and access to DNA specimens and attached data, clinical and genetic, held in large disease cohort collections. The balance of patients' rights and science/society's quest for broad open access must be resolved in order to realize the promise of gene association studies of complex human disease. A way forward may be to convene a colloquium of international medical and science organizations charged with developing global consensus guidance and ethical principles for access to and use of genomic biobanks.

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Year:  2009        PMID： 19630558     DOI： 10.1146/annurev-genom-082908-150133

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


  22 in total

Review 1.  Bioethical considerations in developing a biorepository for the Pneumonia Etiology Research for Child Health project.

Authors:  Andrea N DeLuca; Alan Regenberg; Jeremy Sugarman; David R Murdoch; Orin Levine
Journal:  Clin Infect Dis       Date:  2012-04       Impact factor: 9.079

2.  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

Review 3.  Using electronic health records to drive discovery in disease genomics.

Authors:  Isaac S Kohane
Journal:  Nat Rev Genet       Date:  2011-05-18       Impact factor: 53.242

4.  Access policies in biobank research: what criteria do they include and how publicly available are they? A cross-sectional study.

Authors:  Holger Langhof; Hannes Kahrass; Sören Sievers; Daniel Strech
Journal:  Eur J Hum Genet       Date:  2016-12-21       Impact factor: 4.246

5.  Biobank participation and returning research results: perspectives from a deliberative engagement in South Side Chicago.

Authors:  Amy A Lemke; Colin Halverson; Lainie Friedman Ross
Journal:  Am J Med Genet A       Date:  2012-03-21       Impact factor: 2.802

6.  Stewardship practices of U.S. biobanks.

Authors:  Gail E Henderson; Teresa P Edwards; R Jean Cadigan; Arlene M Davis; Catherine Zimmer; Ian Conlon; Bryan J Weiner
Journal:  Sci Transl Med       Date:  2013-12-11       Impact factor: 17.956

7.  Recent developments in longitudinal studies of aging in the United States.

Authors:  Robert M Hauser; David Weir
Journal:  Demography       Date:  2010

8.  Current practices for access, compensation, and prioritization in biobanks. Results from an interview study.

Authors:  Holger Langhof; Hannes Kahrass; Thomas Illig; Roland Jahns; Daniel Strech
Journal:  Eur J Hum Genet       Date:  2018-08-08       Impact factor: 4.246

9.  Attitudes of African-American parents about biobank participation and return of results for themselves and their children.

Authors:  Colin M E Halverson; Lainie Friedman Ross
Journal:  J Med Ethics       Date:  2012-05-09       Impact factor: 2.903

Review 10.  Host genomic influences on HIV/AIDS.

Authors:  Stephen J O'Brien; Sher L Hendrickson
Journal:  Genome Biol       Date:  2013-01-31       Impact factor: 13.583
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