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 […]
The global consultancy firm provides DNAdigest with expert support KPMG, a leading consulting firm in security audits is partnering with DNAdigest. In December we signed our partnership agreement with KPMG in which DNAdigest will receive pro-bono support towards designing our secure platform. Thanks to the social commitment of KPMG, DNAdigest will benefit from expert advice to implement security by design. The partnership agreement includes feedback on our platform design as well as active engagement in our workshops and hackday activities. Stay tuned to our newsletter for announcement of our upcoming events!
WiSE awards winners + photos Congratulations to Julie Barnes the winner of the WiSE award for Entrepreneurship and Innovation 2013. If you do not know of Julie Barnes already, please take the time to look up the great work she is doing as CEO of Abcodia. For the rest of the award winners, have a look at the WiSE campaign website: WiSE award winners 2013 And browse through the pictures from the day at SaturEyes.com.
On her blog Kerstin Forsberg reports on the many opinions expressed relating to de-identification (anonymization) and patient consent for data sharing. One patient advocate at the conference stated “No-one ever asks if you want to be de-identified or not”. For the individuals who do not mind all their data to be entirely public (i.e. not fully de-identified) projects like the Personal Genomes Project is an option to contribute all your genomic data and medical data for open access and public use without any promises of privacy. Since last week the Personal Genomes project launched in the UK, and they have put a call out for 100,000 volunteers to donate their data: personalgenomes.org.uk The options today are all-or-nothing both with respect to anonymization and data sharing. We want to provide an alternative to meet the needs of both patients and researchers: DNAdigest is developing a platform to apply a patented mechanism for data sharing allowing variable levels of anonymization. Our mission is to enable the widest possible reuse of genomic data within the consent given by the individual donating the data.
The government initiative to sequence 100,000 genomes within the NHS presented more details of their plan and approach at their first public engagement event on October 3rd. The event and the information gleaned from the Q&A session was covered well by this blog post by Caroline Wright at GenomesUnzipped: http://www.genomesunzipped.org/2013/10/genomics-england-and-the-100000-genomes.php