It may seem dramatic but data hoarding really does kill, as more and more findings show. Fast technological advances should mean faster research, faster diagnoses and faster cures. But data hoarding is slowing this process down and preventing these technological advances from having the efficient and effective results that they should. As recode.net reports, huge research institutions – from IBM to UC Berkeley – are backing artificial intelligence and big data to develop better treatments for genetic disease. But while data hoarding continues to be common practice in research these computational tools can only produce limited results. To harness the power of these computation tools we need to open up data. The regulations need to move with the technology. Through innovative solutions data can be kept secure and anonymous without being locked away and untouchable. The consequences of data hoarding are real. Lives will be saved with improved data access. Much of the research is already out there, and the technology to quickly analyse hundreds of thousands of clinical trials and genomic data is fast being developed. Yet accessing the data remains a problem. And its one that we need to solve. Read the full story on recode.net here.
This week the Open Knowledge Foundation ran a workshop on Open Data, Personal Data and Privacy. A recurring theme of the OKFN workshop was the interface of personal data and OpenData. The benefits of making data as easily available as possible are vast but it comes with a very sensitive issue attached. Protecting the privacy of individuals is paramount. The advantages of the transparency that OpenData brings are obvious, but for which purposes is it relevant to include personally identifiable information (PII) as OpenData, and to what extent is it possible to transform PII to OpenData or Open Knowledge. When it comes to Open Data, personal data and privacy it is important to tread carefully. One strong message from the workshop was the complexity of communicating both OpenData and privacy. For each of these terms the participants brainstormed their associations and found that the connotations of these terms vary widely depending on your background and the context the terms are applied in. Our CEO Fiona Nielsen participated in the OKFN workshop and chaired a discussion session on the topic of data transformation through aggregation and to what extent this can be applied to transform data to openly available data sets or OpenKnowledge. If you […]
This new scientific data journal for publishing data descriptors spans neuroscience, ecology, epidemiology, functional genomics and environmental science. www.nature.com/scientificdata Along with its varied content Scientific Data is the first NPG publication to implement data citations and articles cite data in figshare, OpenfMRI, GEO and GenomeRNAi. We are very pleased to see that Scientific Data promotes the Joint Data Citation Principles http://www.force11.org/datacitation .Scientific Data is collaborating broadly to promote data sharing and community standards. The launch of this journal really highlights how important the practices surrounding data are to scientific research. Hopefully the data journal will encourage better data practice, including increased availability and access. PS. We love this video describing the rationale for creating Scientific Data 🙂
This May the Wellcome Trust published a report from the Expert Advisory Group on Data Access (EAGDA). ‘Establishing Incentives and Changing Cultures to Support Data Access’ is a report which aimed to understand the factors which affect the ease with which individual researchers can make their data available to other researchers. Read the full report and you will see that it echoes earlier research in the area and highlights a key issue: data sharing is not yet being given the status it deserves. As stated under the reports ‘key findings’ “the infrastructures needed to support researchers in data management and sharing, and to ensure the long-term preservation and curation of data, are often lacking (both at an institutional and a community level)”. Data sharing continues to be a major subject of debate and through such debate and investigation the need for to improve the infrastructure of data sharing, to widen and better the data sharing that exists, is continually emphasised. The results of this report show that need for clear and updated policy is real. Data sharing in research is not something that can be ignored. It has already taken a hold in genomics and through collaboration we can really […]
DNA Digest CEO Fiona Nielsen has been interviewed by Maneesh Juneja for his first ‘Start Up of The Week’ post. You can read the full interview here to find out what the future holds for DNAdigest. It was a huge honour to be selected by Maneesh, who is a ‘big thinker’ in science and healthcare, speaking at prestigious events such as TEDx StPeterPort. You can watch that very talk on digital health technologies here. Why not take a look at his TEDxO’Porto 2013 talk as well. Thanks to Maneesh for the interview. Make sure you explore the rest of his blog!