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Data sharing Mark Walport 13 March 2009. Research is generating rapidly increasing volumes of data… DNA sequencing: total gigabases by week (80 gigabases.

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Presentation on theme: "Data sharing Mark Walport 13 March 2009. Research is generating rapidly increasing volumes of data… DNA sequencing: total gigabases by week (80 gigabases."— Presentation transcript:

1 Data sharing Mark Walport 13 March 2009

2 Research is generating rapidly increasing volumes of data… DNA sequencing: total gigabases by week (80 gigabases per week is 130,000 bases per second) Structural Biology: Structures deposited in the Protein Data Bank* *graph extracted from the Interim Report of the Blue Ribbon Task Force on Sustainable Digital Preservation and Access (Dec 2008) Courtesy of Julian Parkhill

3 …in a diverse range of formats

4 Through sharing data we can increase its power Genome-wide association studies are revealing the genetic basis of common diseases through combining data across large patient cohorts… … and databases such as DECIPHER at the Wellcome Trust Sanger Institute, enable researchers to share data to gain new insights DECIPHER: Overview map of consortium members Courtesy of Leena Peltonen

5 personal information is individual & precious to each one of us – its vital that we treat it properly there is a long-standing and healthy debate about the balance between the right to privacy and the necessity to hold and share data review announced by PM on 25/10/2007 during his speech on liberty Data Sharing Review

6 High profile disasters…

7 Data sharing Public & private benefit law enforcement/ public protection national security crime protecting the vulnerable key issue: proportionality

8 Data sharing Public & private benefit provision of services targeted services easier transactions improved efficiency key issue: choice of terms of service

9 Data sharing Public & private benefit research and statistics enabling robust and evidence led policy key issue: confidentiality vs consent 2 BMJ 2001; 323: p363 Br J Cancer 2002; 86: p1732 Prenat Diagn. 2007; 27 p1191

10 Common issues highlighted general confusion/uncertainty about the law, including the complex interplay between different strands of the law a lack of public trust in data handling a lack of transparency in what is done with personal data inadequate regulatory powers, sanctions and resources lack of clear accountability in a complex shared data environment the subject access process out-of- date in the internet era

11 Recommendations (1) Transform personal and organisational culture: clarify corporate governance; maximise transparency; improve training; and consider credentials Clarify and streamline legal framework: urge HMG to lead EU debate on reform; authoritative guidance through statutory CoP; and a new statutory fast-track procedure where there is a strong case for removal of a legal barrier Ensure effective enforcement: implement fine provisions quickly; provide new powers to inspect & audit; ensure adequate resources; and revise structure Safeguard and protect publicly available (online) information: call for new enquiry into online services that aggregate personal information; and ban the sale of the edited electoral register

12 Recommendations (2) develop mechanisms for safe and secure research and statistical analysis: develop safe havens as environment for population-based research and statistical analysis create system for accrediting approved researchers government departments wishing to develop, share and hold should work with academic and other partners to create safe havens call on HMG and NHS to maximise potential benefits made possible through safe havens NHS should develop a system to allow approved researchers to work with healthcare providers to identify potential patients

13 Coroners and Justice Bill welcome the intention but essential to ensure that appropriate safeguards are in place to facilitate beneficial data sharing while maintaining public confidence order making powers relates to Thomas/Walport recommendation 8 on overcoming legal obstacles and absent powers separate package of measures for research access (recommendations 15-17 Thomas/Walport)

14 Future challenges data security management & governance of data public trust infrastructure rising volumes & complexity of data pose immense challenges for storage & curation key data resources need coordinated and long- term sustainable funding ELIXIR is aiming to build a sustainable infrastructure for biological information across Europe technical and cultural issues coordination & advocacy from key communities provision of information & guidance for researchers appropriate incentives & recognition for researchers development of key technical standards, metadata, etc nurturing skills in data management


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