UK BIOBANK Ethics and Governance Framework ... - Wellcome Trust

governance and indeed overall success. Without doubt, participant representation and involvement areessential in this day and age.’ [P]91. One respondent also noted that the Framework did not make it clear how conflicts ofinterest would be dealt with by the Board of Directors.5.4 Science Committee92. In addition to requesting more information on the role of the Science Committee, somerespondents raised concerns about the membership and transparency of the Committee.93. As with the Board of Directors, a few respondents noted that they would like to see lay orparticipant involvement, for example:‘…the Science Committee – membership will consist of two Board members – (each who alreadyrepresent the funders) and a further three nominees of the funders. I think that this isoverrepresentation. Why couldn’t this be more representation of the general scientific community, thepatients and wider society. Or is there concern that the public are not able to understand the science?’[P]94. Respondents commented on the need to ensure the relevant expertise, broadly understood,was present on the Committee. This included the need to ensure that both the ScienceCommittee and the Ethics and Governance Council included scientists and ethicists intheir membership:‘We note the arrangements for management and accountability of the Biobank, and for theappointment of a Science Committee. We have in the past commented on the need for a suitable rangeof scientific and medical disciplines, for example to include social scientists and geriatricians.’ [O]‘Whilst the responsibilities of the Science Committee and Ethics and Governance Council are distinct,we believe that it will be important for cross fertilisation between them. The Science Committee shouldbe aware of ethical issues and vice versa. Therefore the two groups should contain experts from theother discipline ie ethics on the Science Committee and vice versa.’ [O]95. One respondent noted that the Committee’s processes should be as open and transparentas possible:‘…of the Science Committee, should be open in the same way as the HGC meetings are to reinforce itstransparency and external scrutiny, at least by the wider academic community.’ [O]5.5 Ethics and Governance Council96. A number of respondents commented on their satisfaction with the Ethics andGovernance Council’s remit and selection procedures:‘We are pleased that there is to be an independent council to govern the work of UK Biobank and tomonitor its compliance with the ethics and governance framework, once agreed.’ [O]‘[We] applaud the setting up of the Ethics and Governance Council, and the fact that appointments toit will pay full regard to the Nolan principles.’ [O]‘The “Ethics and Governance Council” is truly an interesting model which takes into account thepublic’s opinion and concern. It is a new and innovative approach, which should be encouraged. We34