INNOVATIVE DATA CAPTURE CHARITY AIMS TO BREAK BOTTLENECKS FOR CURING GENETIC DISEASES
A new scientific charity has been launched to address and remove the bottlenecks researchers face in tackling genetic diseases. Currently genetic research faces challenges in reaching a cure because crucial data simply isn’t available. By sharing data securely DNA Digest could save lives.
DNA Digest is now raising $25,000 to break the biggest bottleneck in genetic research – data interpretation – by prototyping solutions and bringing collaborators together. Founder and CEO of DNA Digest Fiona Nielson explains: “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.
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.
Nielsen says: “Data is the key to developing a cure, but right now everyone is hoarding their data because a solid and secure mechanism to share it doesn’t exist. We believe the technological solution is already there but we need the shareholders and people to come together to collaborate, this is exactly what DNA Digest hopes to do.”
The $25k campaign is running on Indiegogo.com from the March 19 to April 16 2014. Prior to launch, the campaign created a widely successful social media campaign reaching more than 300,000 people: in just three days it raised $3,040.
The campaign has had more than 2000 visits, donors worldwide and has resonated with organisations such as the Alkaptonuria Society, which recently closed a successful round of crowdfunding. Nicholas Sireau, Chairman and CEO of the AKU Society, said: “DNA Digest has shown great potential in building the solutions needed for research to progress significantly.
“In a short time DNA Digest has started creating waves around our communities and we really look forward to the outcome.”
The funds raised so far have already been sufficient to hold a new hackday held at London within the Wayra Academy where DNA Digest is based. DNA Digest’s next steps are to prototype it’s first solution and it has so far been featured in the Sunday Times and mentioned in Wired.