From Rosalind Franklin to Barack Obama: Data Sharing Challenges and Solutions in Genomics and Personalised Medicine

The New Bioethics : a Multidisciplinary Journal of Biotechnology and the Body
Mark Lawler, Tim Maughan

Abstract

The collection, storage and use of genomic and clinical data from patients and healthy individuals is a key component of personalised medicine enterprises such as the Precision Medicine Initiative, the Cancer Moonshot and the 100,000 Genomes Project. In order to maximise the value of this data, it is important to embed a culture within the scientific, medical and patient communities that supports the appropriate sharing of genomic and clinical information. However, this aspiration raises a number of ethical, legal and regulatory challenges that need to be addressed. The Global Alliance for Genomics and Health, a worldwide coalition of researchers, healthcare professionals, patients and industry partners, is developing innovative solutions to support the responsible and effective sharing of genomic and clinical data. This article identifies the challenges that a data sharing culture poses and highlights a series of practical solutions that will benefit patients, researchers and society.

References

Jul 13, 2004·Science·Zhen LinRuss B Altman
Jan 18, 2008·The New England Journal of Medicine·Erick H TurnerRobert Rosenthal
Feb 8, 2014·The Lancet Oncology·Mark LawlerUNKNOWN European Cancer Concord (ECC)
Apr 17, 2014·Journal of the American Medical Informatics Association : JAMIA·Deevakar RogithElmer V Bernstam
Nov 4, 2015·Cancer Discovery·Mark LawlerUNKNOWN Clinical Working Group of the Global Alliance for Genomics and Health (GA4GH)
Jan 21, 2016·The New England Journal of Medicine·Dan L Longo, Jeffrey M Drazen
May 7, 2016·Nature Medicine·Lillian L SiuEmile E Voest
Jun 11, 2016·Science·UNKNOWN Global Alliance for Genomics and Health
Sep 23, 2016·The New England Journal of Medicine·Robert L GrossmanLouis M Staudt

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Citations

Oct 28, 2017·Briefings in Bioinformatics·Gonzalo Gómez-LópezFátima Al-Shahrour
Jan 27, 2018·Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz·H GehringM Imhoff
Jul 3, 2019·Briefings in Bioinformatics·Charles VesteghemMartin Bøgsted
Jan 9, 2020·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Jennifer N DinesColin C Pritchard
Feb 15, 2020·Scientific Reports·Isamu HoshinoHisahiro Matsubara
Nov 26, 2021·The New Bioethics : a Multidisciplinary Journal of Biotechnology and the Body·Trevor Stammers

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Methods Mentioned

BETA
X-ray

Software Mentioned

GA4GH
GA4GH Sharing Ethics Toolbox Consent Data Sharing Tool P3G - I...
GA4GH Application Programing Interface ( API

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