2016… What a year! Let’s see what it brought us.
First of all, thank YOU for being with us, for your continuous interest in and support of the work of DNAdigest. We hope you will stay with us in the future and will be joined by new open hearts and minds who see the future of this world in SHARING and OPENING.
We do believe that, despite many disappointments, this year has brought an enormous number of positive changes (thank you Adelina for brining this to our attention!), and in general this world has become a bit better!
We conducted around 20 interviews with people who are solving the problems of genomic data sharing, locally or globally. With the interview of Prof Stephan Beck from the Personal Genome Project UK , we started the series of interviews about these exciting projects that are currently present in four countries. The DataSHIELD team told us the full story about their open software for data analysis. Mathew Pletcher spoke to us about the MSSNG (missing) project which is clearly a huge step towards understanding and handling autism. Clare Walton presented an honest and touching report on what it really means to live with an undiagnosed condition that her son Rowan – a fantastic little peaceful warrior – has had since he was born. Steven Keating – scientist and patient – told us his fascinating story about his medical and scientific journey.
In March, together with Repositive, we published an Open Access paper in PLoS Biology. Among other things, it contains a comprehensive list of ~30 human genomic data repositories.
In December, we published a book by Manuel Corpas called “Perfect DNA”. This is a sci-fi story based on Manuel’s experience of being one of the first people on this planet to sequence his own DNA and the DNA of his family members. The book raises a multitude of important questions that people will have to face one day, and we feel it is going to happen sooner than later! You can read more about the book or purchase the kindle version here. Hard copies will be available within the next few days.
We supported two BioData World Congresses, and the plan is to continue to do this in the future.
In April and August, we conducted two workshops about finding and accessing human genomic data for research. We also had a hackaton in London that we organised together with Bionode.
We participated and continue to participate in the work of the Global Alliance for Genomics and Health, which is working on defining best practices for handling genomic data globally. We attended the ICHG2016 conference where BRCA Exchange – one of the products of GA4GH – was launched. If you have not seen the recent survey YourDNAyourSay that studies public attitudes to genomic data sharing with representatives of different institutions (medical doctors, non-profit researchers and for-profit researchers), you can do it now.
Throughout the whole 2016, we were thoroughly reviewing our activities and operations. At the end of the year, we started a big reorganisation of DNAdigest. We will reveal the details as soon as possible, but already now you can see this in our new website design. There are several exciting projects under construction, so stay tuned for our news and, who knows, maybe next year you will find yourself diving deeper in the sea of possibilities and swimming together with us towards a more sharing, more open world!
We wish you and your close ones
a fantastic winter season and a fresh new start in 2017!