Recent activity

This page contains the details of recent activities of the UK Biobank Ethics and Governance Council. In particular this page will highlighted situations where UK Biobank has made significant revisions to its Ethics and Governance Framework (EGF) after consultation with the Council.

March 2010:

You are warmly invited to a public meeting and discussion about UK Biobank to be held on the 22 March 2010 at Sheffield Town Hall.

Half a million volunteers - including thousands from Sheffield - are giving information about their health and lifestyle, plus samples of blood and urine, to an ambitious project called UK Biobank. In doing so, they are building a resource that scientists will use for research into cancer, heart disease, dementia and other illnesses.

But which scientists should be allowed access to this material?

Are there some types of research for which it should not be used?

How should people and participants' interests be safeguarded?

And what other questions should we be asking?

You may be one of the participants or you may have no connection with the project. You don't have to be an expert of any kind and you certainly won't be put on the spot. But if you're interested in this kind of issue and might want to add your voice, do come along.

It's free and there will be drinks and light snacks at the end.

The meeting is being organised by the UK Biobank Ethics and Governance Council - an independent body that advises UK Biobank on ethical matters. UK Biobank itself will also be represented. Both organisations are keen to hear what members of the public think.

You don't have to register in advance, but it would help us make the arrangements if you did. Please register at www.wellcometrustevents.org/UKBiobankEGC or telephone 020 7611 8777, or email s.bassam@wellcome.ac.uk.

Monday 22 March 2010 Meeting 6.00-7.30pm; refreshments 7.30-8.30pm

December 2009: The Council held a workshop on 8th December 2009 entitled 'Involving publics in biobank research and governance'. The aim of the workshop was to inform the EGC and consequently UK Biobank itself about a number of different methods of public involvement which may be of benefit to UK Biobank, the EGC, the funders and potentially to other biobanking projects. In order to achieve this aim we drew on expert testimonies from practitioners who have worked with certain models of involvement (e.g. consultative panels, citizens' jurys, citizens' inquiries and public/participant involvement in governance bodies) and academics who have proposed certain models in theoretical terms. A report of the workshop will be available on this website shortly.

September 2009: EGC response to Lancet comment entitled 'Consent for biobank tissue in somatic-cell nuclear transfer'

June 2007: Revision of the EGF: Right to withdraw from UK Biobank

		UK Biobank Ethics and Governance Council

Home How we operate Meetings and reports Members FAQs Recent activity Press relations An independent council funded by the Wellcome Trust and Medical Research Council		Recent activity This page contains the details of recent activities of the UK Biobank Ethics and Governance Council. In particular this page will highlighted situations where UK Biobank has made significant revisions to its Ethics and Governance Framework (EGF) after consultation with the Council. March 2010: You are warmly invited to a public meeting and discussion about UK Biobank to be held on the 22 March 2010 at Sheffield Town Hall. Half a million volunteers - including thousands from Sheffield - are giving information about their health and lifestyle, plus samples of blood and urine, to an ambitious project called UK Biobank. In doing so, they are building a resource that scientists will use for research into cancer, heart disease, dementia and other illnesses. But which scientists should be allowed access to this material? Are there some types of research for which it should not be used? How should people and participants' interests be safeguarded? And what other questions should we be asking? You may be one of the participants or you may have no connection with the project. You don't have to be an expert of any kind and you certainly won't be put on the spot. But if you're interested in this kind of issue and might want to add your voice, do come along. It's free and there will be drinks and light snacks at the end. The meeting is being organised by the UK Biobank Ethics and Governance Council - an independent body that advises UK Biobank on ethical matters. UK Biobank itself will also be represented. Both organisations are keen to hear what members of the public think. You don't have to register in advance, but it would help us make the arrangements if you did. Please register at www.wellcometrustevents.org/UKBiobankEGC or telephone 020 7611 8777, or email s.bassam@wellcome.ac.uk. Monday 22 March 2010 Meeting 6.00-7.30pm; refreshments 7.30-8.30pm December 2009: The Council held a workshop on 8th December 2009 entitled 'Involving publics in biobank research and governance'. The aim of the workshop was to inform the EGC and consequently UK Biobank itself about a number of different methods of public involvement which may be of benefit to UK Biobank, the EGC, the funders and potentially to other biobanking projects. In order to achieve this aim we drew on expert testimonies from practitioners who have worked with certain models of involvement (e.g. consultative panels, citizens' jurys, citizens' inquiries and public/participant involvement in governance bodies) and academics who have proposed certain models in theoretical terms. A report of the workshop will be available on this website shortly. September 2009: EGC response to Lancet comment entitled 'Consent for biobank tissue in somatic-cell nuclear transfer' June 2007: Revision of the EGF: Right to withdraw from UK Biobank 215 Euston Road London NW1 2BE UK T +44 (0)20 7611 8888 F +44 (0)20 7611 8545