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There is a huge potential for data powered genetic research, but with current practices this is being wasted. Although lots of funds are spent on generating DNA data, sharing and reusing data is still too difficult. The obstacles are many, including: the need for data privacy, the lack of technological solutions for efficient data reuse, the increasing size of datasets, different interests of researchers in academia versus industry and varying legal consent.
Genetic disease include rare diseases, inherited disorders and cancer. All of us know someone affected by a genetic disease. We need to collaborate across disciplines to develop new solutions. Our work is centered around workshops and hack days where we test ideas with participants from all stakeholder groups, including: scientists, patients, ethicists and software developers.
We are part of the wider movement for open science. Our aim is to enable data-driven research for greater reproducibility of results and open sharing of knowledge generated. You can help us achieve this by supporting our campaign and joining our events.
There is no single solution to the complex problem of data sharing. Whilst we believe the technological capability currently exists there are significant societal and organisational challenges which also exist. We believe the answers lie in collaboration and cooperation between stakeholders and across disciplines.
This is why we want to continue our work organising hack days, workshops, outreach, education and public engagement. For our efforts to be effective we need to raise funds to create, organise and conduct future programmes and to maintain our small administrative team. We are seeking to raise $25,000 to run hack days, workshops, studies and prototype solutions, including:
- Wikipedia editathon: documenting and describing the existing tools, databases, mechanisms for data sharing.
Survey stakeholders: Groups in academia and clinical genetics on how much data is being generated, how much is being shared and how? And share our findings widely with the public.
- Workshops with patient communities: What does it mean to share your genetic data for research? Where does your data go? Who does it benefit? Is there any risk?
- Inter-disciplinary Hack days: How can we improve the tools that are already out there? What are the missing pieces that will enable more data reuse? What are good approaches that need to be taken further? What can we prototype to bring us closer to functional and sustainable solutions?
We would love to hear from you. Talk to us and please let us know what kind of programmes you would like to see, or ‘book us’ for a hack day at your institution by selecting the ‘Hack Day’ perk for your donation.
One of the projects we have been working on at our hack days is the idea of a DNAdigest platform for data sharing based on a patented mechanism for secure data access:
This is just one of our projects that has come out of our work from the last six months of 2013:
- Hack Day in Cambridge, UK, conducting an interactive workshop outlining the stakeholder perspectives.
- Workshop at ICSB, Copenhagen, Denmark, where we discussed the bottlenecks in genetic analysis and interpretation.
- Hack Day in London, UK, where we discussed and designed how solution models could address the problems of privacy and security for data sharing and data access.
- And our CEO Fiona Nielsen presented at:
We want to organise more workshops and hack days to engage our community in developing new solution models for ethical data sharing. We have budgeted our funds to cover the expenses for organising six events over a 12-month period. The more funding we can raise through our campaign, the less dependent our events will be on finding industry sponsors to cover expenses.
So far our activities have been centred around Cambridge and London, UK, but we would like to expand to more major cities in the UK and collaborate with research institutions to organise hack days in other places in Europe too.
As thanks for your donation to our campaign, we're offering digital perks, exclusive events and limited edition DNAdigest merchandise to show off your support for open science and collaborative data sharing.
The below are the first previews of our merchandise. We have many more to be launched shortly.
For a donation of $40 we will send our valuable values t-shirt.
Featuring a selection of the values DNA Digest stands for. This t-shirt is printed by Rapanui, an ethically sourced and conscious t-shirt supplier on super sustainable cotton. For sizes please see our gallery and when ordering be sure to add the size onto your shipping address.
For a donation of $45 we will send you the DNA Digest Drinker.
Featuring a "fresh" design of nucleobases and the DNADigest Logo.
For a donation of $50 we will send you our Code For The Heart t-shirt.
Featuring a full colour print containing the code that makes heart muscle and DNA Digest. This t-shirt is printed by Rapanui, an ethically sourced and conscious t-shirt supplier on super sustainable cotton. For sizes please see our gallery and when ordering be sure to add the size onto your shipping address.
For a donation of $80 we will send you BOTH our Valuable and Heart Code T-shirt's.
You're doubling you dollar with these two t-shirts. For a donation of $80 you'll receive both t-shirts! Both printed in super sustainable cotton and both supporting us and open science. Please be sure to include your size required in by checking out our sizing guide on our gallery.
For a donation of $100 DNA Digest in partnership with LoveGene will create your unique genetic dating profile based on your pheromone genes. Please note this perk is currently only available to our European supporters, this perk includes:
- P&P one way anywhere in Europe, saliva swab and analysis.
- Tracking and consolidation of your results.
- An exclusive offer of 6 months on the LoveGene genetic dating website for backers.
For a donation of $1000 DNA Digest in conjunction with playDNA will create your personal DNA portrait in exclusive campaign colours. Gene choices include eye colour; memory; early bird/ night owl preference; bitter-taste ability and pain sensitivity. Please see our gallery for a selection of colours, this perk includes:
- A 40x60cm Fine Art quality canvas of your DNAPortrait (after a saliva swab)
- An easy to read Information Guide explaining the science behind your art
- Certificate of your results, outlining which version of each gene you have
- A High resolution digital version of your DNAportrait on CD
You can support our initiative by donating to our campaign here on Indiegogo and by sharing our link with your friends who care about faster treatments for genetic diseases.
the Indiegogo share tools on this page to tweet, like, G+, or email our
campaign to your friends. That raises our Gogo Factor and could land us
a spot on the front page!
Talk about the DNA Digest campaign in your blog, Facebook page and social media.
- Tell all your friends about us and participate our events.
Email: email@example.com or reach out to us on twitter @DNADigest
Nick Sireau from FindACure has been bringing together patient communities in order to help find a cure for rare diseases. He is also Chairman and CEO of the Alkaptonuria Society and has been leading a clinical trial with 15 biotech/pharma companies, trial centres and universities in nine countries.
Prof Anthony Brookes is a Genetics Professor at the University of Leicester, specialising in using bioinformatics and genomics technologies in the analysis of human genome diversity and disease. His lab has already been working on web based data management systems for cataloguing human genetic variation. These include a large-scale International Project that aims to unify human and model organism genetic variation databases, and a database providing a centralised compilation of human genetic association studies.
Dr Chris Torrance is the Chief Scientific Officer at Horizon Discovery. His principal expertise lies in cancer cell biology and drug discovery. In this field, he has led project teams taking drug targets from inception through to hit identification, lead optimisation and into preclinical studies. Chris has significant oncology research and development experience, including six years as a senior manager at Cambridge-based pharmaceutical company, Vernalis.
Dr Mohammad Al-Ubaydli, the CEO and founder of Patients Know Best, has over 15 years of experience in medical software, and has made major contributions to patient care, including publishing 7 books on the topic. He trained as a physician at the University of Cambridge; worked as a staff scientist at the National Institutes of Health; and was a management consultant to US hospitals at The Advisory Board Company.
Our video was produced by MondoTV with financial support from the Wysing Arts Centre in Cambridge.
PlayDNA for contributing their DNA Portrait Perk. Rappanui for contributing their t-shirts.
With special thanks to Philip Pepper and Simone Salardi for graphics designs.
DNAdigest a Company Limited by Guarantee, registered as a charity in England and Wales
Registered Address: c/o BCS, Windsor House, Station Court, Station Road, Great Shelford, Cambridge, CB22 5NE, United Kingdom
Company Number: 08585251 Charity registration number: 1154095