UK Biobanking Showcase 2017
The annual UK Biobanking Showcase was held on 18th October, 2017 at the Kia Oval cricket ground in London. Over 140 people attended the event, covering human sample resources across the country, universities, medical funders and different medical companies and organisations.
This year’s showcase sought to highlight some of the recent discussions and developments in biobanking including recognition, standards, collaborations and changes impacting public interactions. As with the previous year, the delegates also had the opportunity to debate some controversial topics like, ‘researchers should be able to leave reviews about the resources they have accessed’. Overall, the aim was to present practical information on the future possibilities of biobanking to support the ongoing work in the field.
How can we recognise the work of human sample resources?
The day kicked off with Anne Cambon-Thomsen, CNRS, University of Toulouse, focussing on citations, the importance of sharing information and how sharing should be rewarded. She stated researchers stood to benefit from the existing collections of global sample resources – if they were shared. A number of organisations (BRIF, CoBRA, SHARC and CODATA) have come together to make citation of sample resources incentivised and rewarding to promote sharing and reuse. The Open Journal of Bioresources has recently been launched and is dedicated to the publication of bioresources, thus helping researchers to locate and cite sample resources with high reuse potential.
Also on the topic of referencing and reuse, Carole Goble, The University of Manchester, contributed to the topic of the meaning of recognition by detailing the purpose of the FAIR Principles (Findable, Accessible, Interoperable, Reusable). These principles can be used as guidance when systems are developed and are being utilised across the world in research infrastructures.
These presentations were followed by a panel discussion chaired by Kirstin Goldring, Principle Scientist at AstraZenca, on ‘What is recognition?’ Sarah McDonald, Director of Research, Information and Support services at Sarcoma UK, and Sean James, Arden Tissue Bank Manager, joined Anne Cambon-Thomsen and Carole Goble on the panel. Some points to come out of the discussion were the importance of annual reporting to keep track of referencing, researchers being withheld future funding for not referencing and submitting the annual reports.
New standards, new relationships
The Showcase sought to highlight developments in policy and practice which affect biobanking. The most notable development is ISO/DIS 20387, or the new proposed general requirements for biobanking. Gareth Bicknell, Operations Manager, HBRC, University of Birmingham who is also the UK Academic Expert for ISO/TC276, talked about the new regulation. The regulation focusses on general and structural requirements, impartiality and confidentiality, general resource and personnel, among other things. National comments have been discussed and will be addressed in November 2017. Read more about ISO/DIS 20387 in our blog.
The UKCRC TDCC announced a number of collaborations with external partners to support the work of sample resources. Gary Rooksby, Interactive Software, demonstrated their software’s new facility to automatically convert and upload data to the Tissue Directory. Paul Smith, BC Platforms, described how their platform could be used to integrate UK resources into a wider international discovery platform. Matt McLoughlin, Scientist.com, spoke of how their platform can assist sample resources in connecting to researchers, in particular large pharmaceuticals. James Peach, Precision Medicine Lead at Medicines Discovery Catapult, talked about how their work with the UKCRC TDCC will improve SMEs access to human samples for research.
Kirstin Goldring spoke later in the day on the global need for human sample resource sustainability. She reported preliminary findings of an ISBER survey which focused on the operational, financial and social dimensions of sustainability. They hope to use the results to inform understanding of the level of business planning in the human sample resource community. She encouraged UK sample resource to complete the survey before it closes at the end of October 2017.
Extending on from the operational dimension of sustainability, three researchers (Pip Nicolson, Sara Bonvini and Mark Bodman-Smith) were given a platform to publicise their sample needs. They hoped that delegates would help them find suitable samples. Early signs are promising and we believe good connections were made that could result in research happening as a result of the meeting.
Emerging Issues in Society
Emerging issues in society were discussed in the last session in relation to public views in using human samples and data, regulations in personal data privacy, and ethics arrangements for research with human samples. Amanda Hunn, Joint Head of Policy, HRA, discussed the current work with HRA and HTA, on how researchers should maintain public trust whilst seeking permission to link patient data with human tissue for health related research. The HRA and HTA are looking for examples of good governance, generic ethical and share access good practice. Victoria Chico, Lecturer in Law at University of Sheffield, proceeded to talk about the GDPR. She highlighted the key principles of lawfulness, fairness and accountability. Significant exemptions and challenges around consenting to the use of personal data for scientific research was also described. Catherine Blewett, Research Ethics Service Manager, HRA, ended the talks with valuable information on the ongoing collaboration between the HRA and the UKCRC TDCC. She highlighted the findings of a recent survey of research tissue banks about their knowledge and adherence to the recent ethics policy change.
The Showcase ended as it began, by broaching the issue of recognition. Kevin Adams, Ethical Tissue, ended the day with his account of Ethical Tissue’s activities since winning Biobank of the Year 2016. Kevin ended his talk by announcing the winner and runner-up of Biobank of the Year 2017.
Thank you to everyone who can and made the day a success!
Please find the speakers slides below:
• Dr. Anne Cambon-Thomsen - Citing Biobanks
• Prof. Carol Goble - FAIR Principles practices supporting recognition: experiences from ELIXIR
• Dr. Gareth Bicknell - ISO/DIS 20387: a draft ISO standard for general requirements in biobanking
• James Peach - The SME perspective
• Kirstin Goldring - Biobank sustainability: preliminary survey results on the level of business planning in UK biobanks
• Amanda Hunn - Public perceptions of sharing patient data with tissue for research
• Victoria Chico - The GDPR
• Catherine Blewett - Research Ethics Committees - Expectations and Requirements of Registration for Biobanks
• Kevin Adams - Life after winnning UK Biobank of the year Award