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

• who would have access to the full patient records (e.g. UK Biobank staff, UKBiobank researchers, UK-only researchers, researchers across the world);• if records were to be anonymised, who would carry out the anonymisation process;• what types of information would be collected and from which records data would beaccessed.A number of respondents requested a more detailed explanation of UK Biobank’s policy onwhat information resulting from UK Biobank would be fed back to individual participants.Some respondents noted that participants may expect information of relevance to their healthto be fed back to them in some way. However, respondents differed on the stages at whichsuch information should be provided (e.g. at enrolment or following the initial analyses on allparticipants’ samples) and whether this information should be fed back to the participant ortheir GP.Respondents found the Framework’s proposals around ongoing engagement with participantsand the public, and participants’ expectations of recontact or personal financial gain, broadlyacceptable.Most respondents thought the Framework’s treatment of confidentiality was acceptable.However, there were concerns around access, anonymisation and security of the data.A number of respondents indicated that they were concerned about permission being grantedfor specific types of research, particularly medical market research and insurance industryresearch. A particular concern was access being granted for police use, and there were callsfor a clarification of the law in this area.The majority of respondents found the three management and accountability structures(Board of Directors, Science Committee, Ethics and Governance Council) acceptable.Although, a number of respondents felt that the governance structure as a whole lackedclarity.5