On 21-22 October DNAdigest attended the BioData World Congress 2015 held at the Wellcome Trust Genome Campus in Hinxton. Founder and CEO Fiona Nielsen not only attended the majority of the talks over the two day event, but also took part in the Open Innovation panel and played the role of Amy Friedman in the ‘Genomics in Play’ drama. Additionally, DNAdigest had a stand in a prime location at the event, which was manned by volunteers Craig Smith and Charlotte Whicher. If you’re interested in what people were talking about on Twitter at the conference – you can read the DNAdigest BioData World Congress Storify complete with pictures of presentations from guest speakers and various quotes from talks. Thanks to some strategically placed sweets, we were able to talk to lots of the attendees as well as some of the guest speakers including Dr Robert Green (Harvard Medical School), Dr Bob Rogers (Intel Corporation) and Dr Niklas Blomberg (ELIXIR). During the event, we conducted a short online survey on the genomic data searching / accessing / sharing habits of the attendees and speakers. In exchange for completing the survey we gave away DNAdigest Mugs and T-shirts to 6 lucky winners. Our survey consisted of 3 simple multiple choice questions: The results speak for […]
Last Friday, 21/08, Wayra hosted the DNAdigest symposium “Incentives for data sharing”. On a hot summer Friday in London, we asked the attendees: “How can we create incentives for data sharing in genomics research?” Despite the summer break, we had excellent speakers and a very engaged audience. Both attendees and speakers applauded the great quality of the discussions and the cosy atmosphere of the event. Morning session In the first part, Natalie Banner from the Wellcome Trust, Neil Walker from the University of Cambridge and Shahid Hanif from the Association of the British Pharmaceutical Industry presented multiple prospectives on data sharing. Natalie Banner made it clear that the objective of the Wellcome Trust as a funder is to maximise the benefits for health and society, and gaining the best possible impact of their funding for research. Best possible impact also means maximising data use and utility for reuse, which is why the EAGDA is investigating best practices for data sharing. Natalie’s presentation is available here. Neil Walker presented how funder policies can be difficult to implement for the individual researcher and shared many anecdotes on data sharing and how he uses data management plans to outline for funders how data will […]
What is a rare disease? Rare (or orphan) diseases are defined as conditions affecting less than 1 in 2,000 people in the EU, or less than 200,000 people in the US, or less than 50,000 people in Japan. In the UK, 1 in 17 people has or will develop a rare disease at some point in their life. There are approximately 6,000 rare diseases identified today and the number is growing. 75% of all rare diseases affect children and 30% of rare disease patients die before the age of 5. 80% of rare diseases are of genetic origin, whilst 20% are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. Rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease, but also from patient to patient suffering from the same disease. Rare diseases are often chronic and life-threatening and are difficult to diagnose. On average, it takes 6-8 years to diagnose a rare disease. One of the biggest problems is that usually there are no drugs specifically targeting a given rare disease. And since the potential market segment would be quite narrow, pharmaceutical companies are usually […]
This past weekend, our fourth Hack Day brought together some very enthusiastic people along with the DNAdigest team in the Future Business Centre in Cambridge to discuss the development of the Data Discovery Tool we are working on. We are very excited to say that the day turned out to be very productive. Fiona Nielsen, our CEO, started with a short presentation explaining who we are and what we have done so far. Through the course of the day our attendees divided into three groups each discussing different topics while our team integrated a member into each group so that we could follow up with everyone. Interesting discussions on what exactly can be done to improve the existing prototype on data discovery spread around fast and people were really keen on brainstorming new ideas. Hamza, our Nuffield research student, was going around interviewing. He managed to learn about the workflows and the various online repositories used to access genetic data of three Hack Day participants who use human genomic data in their work. The text mining group explored the options for automatically analysing data set descriptions and labelling them with appropriate ontology tags. One very active contributor was Peter Murray-Rust who […]
The Research Data Alliance (RDA) 3rd plenary conference is being held next week and of course CEO Fiona Nielsen will be in attendance. The event is focussing on data policy and has distinguished speakers from across the globe, from Prof. Mark Ferguson to Dr Ross Wilkinson. The RDA’s mission is to enable open data sharing through building social and technical bridges. This three day event is just one part of their programme to encourage discussion and collaboration between disciplines. You can register here for the event starting Wednesday 26 March. If you can’t make it here is the Research Data Alliance’s Twitter so you can still keep up to date with proceedings. Update: Slidedeck: Links to slides and videos of the talks are available on the Programme page. Storify: There is also a curated version of the social media conversation at the event with visualisations and links to news articles about the Plenary available on the RDA Communications and Social Media page.
Next Thursday, the 27th March, DNAdigest CEO, Fiona Nielsen, has been invited to speak at The 4th Annual Eagle Symposium. The symposium is an all day event presenting challenges and solutions to those in the bioinformatics community, particularly focussing on issues relevant to data sharing. Fiona will be exploring why data sharing, the road map of future genetics, still encounters problems and how DNAdigest is overcoming these challenges to enable efficient data sharing leading to faster cures for genetic disease. The talk, ‘Privacy-preserving Data Access and Improved Data Reuse for Human Genomics Research‘, is at 2:00 pm. You are still able to register for the symposium. If are unable to attend yourself do follow @eaglegen and @DNADigest for updates throughout the day. It’s set to be a great event, with distinguished speakers including a keynote from Cameron Neylon, advocacy director of PLOS, on the role of open source and open thinking in research.
Last week DNA Digest took a trip out of the Wayra hub to hear an expert panel discuss the role and future of patenting in biomedical research. The Talkscience: Patently Obvious? talk and discussion was part of the British Library‘s Science events and was chaired by Professor Jackie Hunter (Chief Executive of the BBSRC) with guest speakers, Professor Alan Ashworth (Institute of Cancer Research), Dr Nick Bourne (Cardiff University) and Dr Berwyn Clarke (Biomedical Entrepreneur). The evening raised a number of interesting issues surrounding patenting in biomedical research but overall the opinions presented were rather moderate. It seemed that everyone was in agreement that there was no clear answer when it comes to patenting, particularly given the nature of biomedical research. Although the panel agreed that patents could hinder research developments, for example by stifling the ability to analyse our own DNA (Professor Ashworth), they could not provide an alternative method through which to fund the research and protect commercial interests. Ultimately, to scrap patents makes research involving hundreds of millions of pounds far too financially risky, particularly, as highlighted by Dr Bourne, when much of the future of the UK is based on a science or knowledge based economy. […]