data discovery

Cambridge news: interview with Adrian Alexa

As you may already know, DNAdigest has recently spun-out Repositive (formerly knows as Nucleobase),  the social enterprise to develop Open Source software tools for researchers. Not long ago, Adrian Alexa, our CTO,  gave an interview for Cambridge News explaining more in depth what lays behind the idea of Repositive. Take a look: That bit in Jurassic Park where Dickie Attenborough explains about Dinosaur DNA (“and bingo… Dino DNA!”) – and then the insect rolls down the tree covered in sap – is, sadly, the total extent of many people’s knowledge of genomic data. You won’t be shocked to hear that there’s quite a lot more to it and, as usual, Cambridge is leading the way. Repositive Ltd (a social enterprise and part of the Social Incubator East programme) is a spin-out of the Cambridge-based charity DNAdigest, fronted by founder Fiona Nielsen and her colleague Adrian Alexa who are both former employees of Illumina (the world leaders in genomic research with a UK office in Saffron Walden). Their mission statement is to ‘empower efficient access and the sharing of genomic data’. Adrian explains: The current practice for sharing and accessing genomic data is very poor. Typically, when a clinic sequences an individual, they will […]

Publishing and Sharing Sensitive Data

Some data are born sensitive, some achieve sensitivity, and some have sensitivity thrust upon them! The Australian National Data Service (ANDS) has just released a Guide to Publishing and Sharing Sensitive Data which includes a decision tree to help researchers decide whether they can publish such data. The guide is drawing the best practice for publication and sharing of sensitive research data in the Australian context. It provides genuine, step-by-step advice about what you need to know and do before publishing and sharing your sensitive data, including confidentialising your human and sensitive data, how to legally do that, what to include in a consent form requesting data publication and sharing etc. By following this Guide, and the steps within, you will be able to make clear, lawful, and ethical decisions about sharing your data safely. In most cases it can be done! By definition sensitive data are ‘data that can be used to identify an individual, species, object, process, or location that introduces a risk of discrimination, harm, or unwanted attention’. For example, sensitive human data most commonly refers to sensitive personal information. That is when the information shared can be used to identify a person or group of people. Personal […]

data accessibility

DNAdigest published: A Focus on Data Accessibility

The DNAdigest team is very happy to announce that our paper ‘The need to redefine genomic data sharing: A focus on data accessibility‘ has been published in the special issue of the Journal of Applied and Translational Genomics as an open access publication. At DNAdigest, we are aiming to improve the shared amount of genomic data which current state is far from sufficient. Believing is not enough in this case so it was important for us to get some real numbers! We interviewed genetics researchers and ran an online survey in order to find out how much and in what way genomic data is being shared.   Through those in-depth contextual interviews along the online survey, we have managed to assess the state of genomic data sharing. Our finding showed that, although the procedures that researchers follow differ among universities, industry and clinics, there are still many common steps in their workflows. Unsurprisingly, most of the researchers agreed that they do not share enough data and would like this situation to change. If you want to take a look at what else we have discovered, be welcome to read the whole article: T v Schaik et al, The need to […]

Data Discoverability in Public Health

Data Discoverability in Public Health

Making datasets ‘discoverable’ is one of the most crucial boundaries that need to be overcome when talking about effective data sharing. New research on Enhancing Discoverability of Public Health and Epidemiology Research data was commissioned by the Wellcome Trust on behalf of the Public Health Research Data Forum. This Forum gets together major international funders that aim to increase the availability of health research data in ethical, efficient and equitable manner, while the research explores how research funders can ease the identification, access and usage of public health and epidemiological data for researchers and therefore accelerate the progress in public health. The research was undertaken by a team led by Dr Tito Castillo along with the support of a few universities, associations and companies. They have conducted a survey, in-depth interviews and analysis of the existing models for enhancing discoverability of data, key findings appeared. The three possible models were proposed: i) a centralised portal model, ii) a data journal model and iii) a linked data model. It is thought that when combined those would highly improve and accelerate the availability of health research data in an ethical and efficient ways. Nonetheless, the centralised portal model was preferred by the research community and proposed […]

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