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Symposium talk abstract: Privacy-preserving data access and improved data reuse for human genomics research

 Privacy-preserving data access and improved data reuse for human genomics research - the DNAdigest initiative

Fiona Nielson - web

By Fiona Nielsen, CEO, DNAdigest

Speaker for our 4th Annual Symposium:

Bigger Than Data - Discover or Die?

Talk time: 2:00 pm 27.3.2014

Talk abstract: "Data sharing in the roadmap of the future of human genetics
Why do the majority of genetic conditions still go undiagnosed on the molecular level? What does this have to do with data sharing? And why is data sharing in human genetics not as easy as setting up a dropbox of files to share with your colleagues? In this presentation Fiona will introduce some of the core difficulties related to data sharing in human genetics, including data privacy, consent for use, data security, and why finding a way around these road blocks is essential to unlock the promise of the genomic revolution for diagnostics and research in genetic diseases.
DNAdigest works to promote and enable easier and more efficient sharing of genomics data for research. We educate and engage our local and international community about the hurdles and dilemmas for data sharing as faced from the perspective of stakeholders in academia, industry and patient communities. As part of our work we are working with our community and supporters to prototype new mechanisms and concepts for data sharing and data access."

Bio: "Following an education in computer science and various roles as programmer/system developer Fiona Nielsen went to The University of Southern Denmark to study bioinformatics building a foundation of natural science upon her computational background. Her work in bioinformatics started with theoretical protein structure prediction, and as a junior researcher at the NCMLS in Nijmegen, the Netherlands, she shifted her focus to epigenetics, and then DNA sequencing analysis. At Illumina in Cambridge, UK, she developed tools for analysis and interpretation of DNA sequencing samples in the Data Analysis for Collaborations group within the bioinformatics department primarily to interpret clinical samples for patient diagnostics for cancer and other genetic diseases. Throughout her career she has worked with a collaborative mindset preferring the synergy from well-managed interactions over the chores of the lone bioinformatics scientist at her desk.

In the spring of 2013 she quit her job at Illumina to found the not-for-profit organisation DNAdigest with the objective to address the issues of data sharing of human genetics data for research, working to promote and enable more efficient mechanisms of data discovery and data access to power the genomic revolution for the benefit of patients. Fiona Nielsen was nominated for the 2013 WiSE awards for innovation and entrepreneurship by the Association of Women in Science and Engineering."


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