Satellite Banner
Next Gen Sequencing
Scientific Community
 
Become a Member | Sign in
Home>News>This Article
  News
Return

Global Alliance to Enable Secure Sharing of Genomic and Clinical Data

Published: Monday, June 10, 2013
Last Updated: Monday, June 10, 2013
Bookmark and Share
Over 70 leading organizations have taken the first steps to form an international alliance dedicated to enabling secure sharing of genomic and clinical data.

The cost of genome sequencing has fallen one-million fold, and more and more people are choosing to make their genetic and clinical data available for research, clinical, and personal use. However, interpreting these data requires an evidence base for biomedicine that is larger than any one party alone can develop, and that adheres to the highest standards of ethics and privacy. These organizations recognize that the public interest will be best served if we work together to develop and promulgate standards (both technical and regulatory) that make it possible to share and interpret this wealth of information in a manner that is both effective and responsible.

BACKGROUND

Technological advances have led to large-scale collection of data on genome sequencing and clinical outcomes, with great promise for medicine. In late January, 50 colleagues from eight countries met to discuss the current challenges and opportunities in genomic research and medicine, and how these groups could work together to foster medical progress. They concluded that the greatest need was a common framework of international standards designed to enable and oversee how genomic and clinical data are shared in an effective, responsible, and interpretable manner. They envisioned a trusted and authoritative international partnership, intended to include leading healthcare providers, research institutions, disease advocacy groups, life science and information technology companies, and others, to facilitate this.

This alliance is now in the beginning stages of formation. Following the circulation of a White Paper, nearly 70 organizations from North and South America, Europe, Asia, Australia, and Africa have joined together to form a non-profit global alliance that will work to develop this common framework, enabling learning from data while protecting participant autonomy and privacy.

THE COMMITMENT

Each organization has signed a non-binding Letter of Intent, pledging to work together to create a not-for-profit, inclusive, public-private, international, non-governmental organization (modeled on the World Wide Web Consortium, W3C) that will develop this common framework. They have committed to furthering innovation by supporting the creation of open technology standards to support the development of interoperable information technology platforms that will embody these principles and accelerate progress in biomedicine. Their shared vision is that ultimately data will be stored in platforms built on the interoperable standards. Whether participants and organizations put all or some data into these or other platforms will be their own decision, but the common vision for the platforms is not that they will be a shared repository for data; rather, the platforms will enable sharing and learning from data wherever it is stored.

In signing the Letter of Intent, the organizations have committed to the global alliance having the following core principles:

•    Respect–for the data sharing and privacy preferences of participants
•    Transparency–of governance and operations
•    Accountability–to best practices in technology, ethics, and public outreach
•    Inclusivity–partnering and building trust among stakeholders
•    Collaboration–sharing data and information to advance human health
•    Innovation–developing an ecosystem that accelerates progress
•    Agility–acting swiftly to benefit those suffering with disease

Member organizations recognize that when discussions occur about sharing large amounts of data, important questions about ethics and privacy naturally arise. Accordingly, members have committed to work together to establish a framework so that participants will have the right to share genomic and clinical information to advance human health as broadly or narrowly as they are comfortable with, including not at all.


Further Information

Join For Free

Access to this exclusive content is for Technology Networks Premium members only.

Join Technology Networks Premium for free access to:

  • Exclusive articles
  • Presentations from international conferences
  • Over 4,000+ scientific posters on ePosters
  • More than 5,300+ scientific videos on LabTube
  • 35 community eNewsletters


Sign In



Forgotten your details? Click Here
If you are not a member you can join here

*Please note: By logging into TechnologyNetworks.com you agree to accept the use of cookies. To find out more about the cookies we use and how to delete them, see our privacy policy.

Related Content

Shining A Light On Bladder Cancer
Researchers scrutinize patterns of mutations in bladder tumor genomes, gleaning insights into the roles of DNA repair and tobacco-related DNA damage.
Friday, May 06, 2016
Single-cell Analysis Hits its Stride
Advances in technology and computational analysis enable scale and affordability, paving the way for translational studies.
Saturday, May 23, 2015
In vivo CRISPR-Cas9 Screen Sheds Light On Cancer Metastasis And Tumor Evolution
Genome-scale study points to drivers of tumor evolution and metastasis, provides roadmap for future in vivo Cas9 screens.
Friday, March 06, 2015
Two Studies Identify A Detectable, Pre-Cancerous State In The Blood
Findings pave way for new lines of cancer research focused on detection and prevention.
Thursday, November 27, 2014
Dramatic Response And Resistance To Cancer Drug Traced
Sequencing reveals why thyroid tumor responded to, and eventually resisted, treatment.
Friday, October 10, 2014
Predicting Cancer’s Next Move
Research offers a new approach to studying drug resistance in cancer.
Monday, November 11, 2013
Surveying Cells, One At a Time
When studying any kind of population — people or cells — averaging is a useful, if flawed, form of measurement.
Wednesday, May 22, 2013
Unpacking a Complex Genetic Suitcase
Long before Homo sapiens lived in Africa, even before Neanderthals roamed part of the world, something interesting was happening on chromosome 17.
Thursday, July 12, 2012
Breast Cancer’s Many Drivers
Extensive sequencing effort looks at the genetic changes associated with various breast cancers.
Thursday, June 21, 2012
Mapping the Healthy Human Microbiome
Broad scientists create molecular tools and applying standardized protocols, generating vast amounts of data to identify the microbiome's most elusive organisms for whole genome sequencing.
Friday, June 15, 2012
Zooming in on Early Embryonic Development
Broad Institute researchers show a high-resolution view of mouse embryogenesis, down to individual bases, showing genetic changes.
Monday, May 21, 2012
Scientific News
Big Genetics in BC: The American Society for Human Genetics 2016 Meeting
Themes at this year's meeting ranged from the verification, validation, and sharing of data, to the translation of laboratory findings into actionable clinical results.
Cancer Genetics: Key to Diagnosis, Therapy
When applied judiciously, cancer genetics directs caregivers to the right drug at the right time, while sparing patients of unnecessary or harmful treatments.
Accelerating the Detection of Foodborne Bacterial Outbreaks
The speed of diagnosis of foodborne bacterial outbreaks could be improved by a new technique developed by researchers at the Georgia Institute of Technology.
Antibiotics Discovered While Sifting Through Human Microbiome
Researchers identify genes in a microbe’s genome that produce antibiotic compounds, then synthesize them without the need for bacterial culture.
A Genome-wide View of Human DNA Viruses
In this study, Duplex sequencing was used to accurately analyse the genome-wide rate of spontaneous mutation of human adenovirus C5 (HAdv5).
Peer Review is in Crisis, But Should be Fixed, Not Abolished
After the time to get the science done, peer review has become the slowest step in the process of sharing studies, and some scientists have had enough.
Rare Immunodeficiency Yields Unexpected Insights
Scientists uncover previously unknown gene mutation revealing the role of a key molecule involved in immune cell development.
Illumina Contributes to ClinVar Database
The contribution includes variants of all classifications, from pathogenic to benign, identified during interpretation of whole genome sequences generated in the CLIA-certified, CAP-accredited Illumina Clinical Services Laboratory.
Agilent Presents Early Career Professor Award to Dr. Roeland Verhaak
JAX professor recognized for the development and implementation of workflows for the analysis of big-data from transcriptomics to next generation sequencing approaches.
Integrated Omics Analysis
Studying multi-omics promises to give a more holistic picture of the organism and its place in its ecosystem, however despite the complexities involved those within the field are optimistic.
Skyscraper Banner

SELECTBIO Market Reports
Go to LabTube
Go to eposters
 
Access to the latest scientific news
Exclusive articles
Upload and share your posters on ePosters
Latest presentations and webinars
View a library of 1,800+ scientific and medical posters
4,000+ scientific and medical posters
A library of 2,500+ scientific videos on LabTube
5,300+ scientific videos
Close
Premium CrownJOIN TECHNOLOGY NETWORKS PREMIUM FOR FREE!