From the principles of genomic data sharing to the practices of data access committees

EMBO Molecular Medicine
Mahsa ShabaniPascal Borry

Abstract

Sharing genomic research data through controlled-access databases has increased in recent years. Policymakers and funding organizations endorse genomic data sharing in order to optimize the use of public funds and to increase the statistical power of databases. Well-established data access arrangements and data access committees (DACs)-responsible for reviewing and managing requests for access to genomic databases-are therefore central for implementing the policies and principles of data sharing. This article aims to investigate the functionality of DACs through the perspective of existing practices.

References

Mar 25, 2009·Nature Reviews. Genetics·Jane KayePaula Boddington
Jul 28, 2009·Annual Review of Genomics and Human Genetics·Stephen J O'Brien
Jun 28, 2011·Human Genetics·Yann JolyBartha M Knoppers
May 10, 2013·Nature Biotechnology·Bartha Maria KnoppersRonald P Stolk
Jan 16, 2014·BMC Genomics·Shreeya Nanda, Maria K Kowalczuk
Jan 31, 2014·Genome Medicine·Jane Kaye, Naomi Hawkins
Aug 28, 2014·Nature Genetics·Dina N PaltooUNKNOWN National Institutes of Health Genomic Data Sharing Governance Committees
Dec 1, 2014·The HUGO Journal·Bartha Maria Knoppers

❮ Previous
Next ❯

Citations

Feb 11, 2016·European Journal of Human Genetics : EJHG·Sabina GainottiDeborah Mascalzoni
Jan 23, 2016·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Mahsa Shabani, Pascal Borry
Mar 2, 2016·BMC Medical Ethics·Michiel VerlindenIsabelle Huys
Mar 5, 2016·Nature Biotechnology·John Wilbanks, Stephen H Friend
Jun 5, 2015·Journal of Medical Genetics·Ma'n H ZawatiVasiliki Rahimzadeh
Apr 16, 2016·Biopreservation and Biobanking·Vasiliki RahimzadehBartha M Knoppers
Sep 30, 2016·European Journal of Human Genetics : EJHG·Stephanie O M DykeBartha M Knoppers
Sep 28, 2017·Journal of Community Genetics·Pascal BorryHeike Felzmann
Dec 29, 2017·BMC Medical Ethics·Catherine Heeney, Shona M Kerr
May 20, 2018·European Journal of Human Genetics : EJHG·Martin BoeckhoutAnnelien L Bredenoord
Aug 25, 2017·Biopreservation and Biobanking·Mahsa ShabaniPascal Borry
Jan 1, 2019·AJOB Empirical Bioethics·Tobias HaeusermannEffy Vayena
Dec 1, 2017·European Journal of Human Genetics : EJHG·Mahsa Shabani, Pascal Borry
Dec 19, 2016·Facets : a Multidisciplinary Open Access Journal·Stephanie O M DykeYann Joly
Feb 26, 2016·Nature Genetics·UNKNOWN ICGC Data Access Compliance Office, UNKNOWN ICGC International Data Access Committee
Mar 23, 2017·Molecular Psychiatry·G SenthilT Lehner
Jul 24, 2018·The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics·Effy Vayena, Alessandro Blasimme
Sep 29, 2018·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Nisha ShahJane Kaye
Nov 30, 2018·Journal of the American Medical Informatics Association : JAMIA·Mahsa Shabani
Dec 7, 2021·Biopreservation and Biobanking·Sofia IacomussiUNKNOWN Telethon Network of Genetic Biobanks

❮ Previous
Next ❯

Related Concepts

Trending Feeds

COVID-19

Coronaviruses encompass a large family of viruses that cause the common cold as well as more serious diseases, such as the ongoing outbreak of coronavirus disease 2019 (COVID-19; formally known as 2019-nCoV). Coronaviruses can spread from animals to humans; symptoms include fever, cough, shortness of breath, and breathing difficulties; in more severe cases, infection can lead to death. This feed covers recent research on COVID-19.

Blastomycosis

Blastomycosis fungal infections spread through inhaling Blastomyces dermatitidis spores. Discover the latest research on blastomycosis fungal infections here.

Nuclear Pore Complex in ALS/FTD

Alterations in nucleocytoplasmic transport, controlled by the nuclear pore complex, may be involved in the pathomechanism underlying multiple neurodegenerative diseases including Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Here is the latest research on the nuclear pore complex in ALS and FTD.

Applications of Molecular Barcoding

The concept of molecular barcoding is that each original DNA or RNA molecule is attached to a unique sequence barcode. Sequence reads having different barcodes represent different original molecules, while sequence reads having the same barcode are results of PCR duplication from one original molecule. Discover the latest research on molecular barcoding here.

Chronic Fatigue Syndrome

Chronic fatigue syndrome is a disease characterized by unexplained disabling fatigue; the pathology of which is incompletely understood. Discover the latest research on chronic fatigue syndrome here.

Evolution of Pluripotency

Pluripotency refers to the ability of a cell to develop into three primary germ cell layers of the embryo. This feed focuses on the mechanisms that underlie the evolution of pluripotency. Here is the latest research.

Position Effect Variegation

Position Effect Variagation occurs when a gene is inactivated due to its positioning near heterochromatic regions within a chromosome. Discover the latest research on Position Effect Variagation here.

STING Receptor Agonists

Stimulator of IFN genes (STING) are a group of transmembrane proteins that are involved in the induction of type I interferon that is important in the innate immune response. The stimulation of STING has been an active area of research in the treatment of cancer and infectious diseases. Here is the latest research on STING receptor agonists.

Microbicide

Microbicides are products that can be applied to vaginal or rectal mucosal surfaces with the goal of preventing, or at least significantly reducing, the transmission of sexually transmitted infections. Here is the latest research on microbicides.

Related Papers

Rutgers Law Review
Gary L Francione
British Medical Journal
P Rhodes
California State Journal of Medicine
Canadian Hospital
G TURNER, G VAN
© 2022 Meta ULC. All rights reserved