Highlights of 2015: Blog Posts & Publications

2015 was a great year for DNAdigest! We organised more events, welcomed more volunteers to the team and increased our output of online communications and blog generation! It has been a joy to watch our followers and online community grow with us and as we approach the end of the year, we want to dedicate this blog post to looking back over 2015 and celebrate the achievements we made together!

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Blog Posts:

April 8th – ‘Genomic Data Sharing – Ethical and Scientific Imperative’
We chose this guest post by Mahsa Shabani because it was one of the most popular blog posts from 2015. Here Mahsa discusses how sharing data via controlled-access databases has been seen as an answer to the identified privacy and legal complications of sharing data. While the structure, membership and procedure of access review varies across DAC’s, Mahsa warns that such access review mechanisms have rarely received attention. By establishing adequate oversight mechanisms on data sharing, progressive and reposonsible data use will be on the horizon.
Read more . . .

July 8th – ‘The Sharers’ Leaderboard: an h-index of data sharing’
We chose this guest post by Kate Hodesdon from Seven Bridges Genomics because it discusses the possibly of codifying best practices of data sharing into a metric for how well scientists share data. Clarifying the best practices of data sharing will help us maximise the value of shared data, but it can also play another important role of helping to incentivise data sharing. In other words, data sharing requires unilateral adoption.
Read more . . .

October 28th – ‘Information management: to federate or not to federate’
We chose this guest post by Yasmin Alam-Faruque from Eagle Genomics because it looks at how Data Federation (a form of data consolidation) may be useful in life science R&D. Yasmin explains how Data Federation systems such as BioMart and Cisco Composite, which are facilitating collaboration, discovery, faster querying and analysis of different data types can impact healthcare and create better integration of genomic information.
Read more . . .

December 1st – ‘Why we should stop talking about data “sharing”‘
We chose this guest post by Barbara Prainsack for our 2015 overview because its clearly highlights the differences between data sharing in organisations and initiatives like OpenSNP, DNAland or Genes for Good and data sharing in commercial companies. Initiatives such as OpenSNP not only promote good data sharing practices but also contribute their own data. On the other hand, there are commercial companies who spread a sharing is caring’ message to citizens and use guilt to encourage more of the general public to share their personal genomic data. Barbara offers a simple solution to help people distinguish the two and that is to scrap the term ‘data sharing’ and replace with ‘making data / information accessible’ to a particular person for a specific purpose.
Read more . . .

December 2nd – ‘Crowdsourced Analysis of Family Genomes’
We chose this guest post by Manuel Corpas for our 2015 overview because it documents a bioinformaticians 6 year experience not only understanding his own personal genome but also those of his direct family. After first purchasing a 23andMe kit in 2009 and discovering a higher chance of prostate cancer, Manuel went on a journey to first obtain, understand and then share both his own and his families personal genomic data online. Thus, showing exactly how far a person can get analysing their genome using direct-to-customer methods.
Read more . . .
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Publications:

October: Simprints – ‘The Legal Landscape’
In October DNAdigest featured alongside Repositive on page 7 of Simprints report on building a social enterprise. DNAdigest and Repositive were used as a case study to show how Founder and CEO Fiona Nielsen spun out Repositive from DNAdigest (a registered charity) as a separate social venture. Doing so enabled her to raise funds to develop a new platform which enables efficient and ethical access to human genomic data. Within the report Fiona highlights how having DNAdigest as a charity and Repositive as a limited company offers the best of both worlds.
Download the report . . .

November: PubMed – ‘Crowdsourced direct-to-consumer genomic analysis of a family quartet’
In November, CEO and Founder Fiona Nielsen was a co-author for Manuel Corpas’ paper on the pioneering experience of a Spanish family pursuing the goal of understanding their own personal genetic data using Direct to Consumer (DTC) tests. Fiona’s contribution to this paper is affiliated with DNAdigest.
Read more . . .
Go to the publication . . .

The DNAdigest team would like to take this moment to say thank you, to all of our followers and readers for your support. May your Holiday season and New Year be filled with much joy, happiness and success.

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