DNAdigest: Secure Sharing of Genomic Data for Research

human genome sequence 2988927 - sharing genomics data

The genomics revolution is already here

The techniques for researching and characterising genetic diseases are available to both researchers (next generation DNA sequencing) and the general public (in the form of personal testing), so we should soon be able to diagnose any genetic disease by sequencing a patient’s DNA.
This is the ultimate goal of research into all genetic diseases, including into hereditary diseases and cancer.

But the sharing of the data isn’t

However, while data output is flooding research centres around the world and genomics results are published in highly prestigious journals, the sharing of the data that enables this research is embarrassingly limited.

The data ownership, the legal consent of the patients involved, the privacy of the patients involved and the sheer volume and complexity of these datasets are a major hindrance to sharing of personal genetic data.

So genetic discoveries remain hidden

As a result, many research units are currently maintaining their own ‘silos’ of potentially valuable sequence and patient data. Needless to say, there may be several big genetic discoveries “out there” already sequenced, but not discovered, because no-one has had the means to bring together the matching pieces of the puzzle.

We want to secure the data, share the knowledge

DNAdigest works to promote and enable easier and more efficient sharing of genomic data for research. We educate and engage the 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 activity, we are working with our community and supporters to prototype new mechanisms and concepts for data sharing and data access.

Read about our mission or check out our Frequently Asked Questions (FAQ) to learn more about what we do. To stay in touch sign up for our latest news, or use the contact form to get in touch with us directly.

Read our Open Access publications

The need to redefine genomic data sharing: A focus on data accessibility

DNAdigest and Repositive: Connecting the World of Genomic Data