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

of a person with dementia to continue to participate in Biobank the Bill may allow them to withdrawthat person. The holder of an PA [power of attorney] would also be able to withdraw a person fromBiobank.’ [O]58. This respondent also noted that the words and sentiments of incapacitated people must berespected when tests are being carried out, as discussed below:‘We would also urge UK Biobank to include a clause in its guidance that states if a person who haslost capacity appears to object to any test or procedure, by words or actions, this should be taken as arequest to withdraw from participation.’ [O]3.3.8 Expectation of personal financial gain59. The majority of respondents found the EGF’s proposals around the expectation ofpersonal financial gain ‘very acceptable’ or ‘acceptable’ (n=14, 74%). Respondentsargued that it was important to outline to participants, from the outset, that there would beno financial or material gain from their involvement in UK Biobank.‘In relation to the statement in the framework document "participants will not be offered anysignificant financial or material inducement to participate. . ." In our view it should be made clear thatparticipants will not be offered any financial or material inducement "significant" or otherwise.’ [O]60. One respondent felt that people were unlikely to get involved purely out of altruisticfeelings and that other rewards or benefits needed to be considered:‘Money and healthcare information might not be the right solution but other measures can be used forthem to feel special.’ [P]3.4 Confidentiality61. This section explores respondents’ comments and concerns about the EGF’s treatment ofconfidentiality in relation to its:• commitment to maintaining confidentiality;• treatment of anonymisation;• policy on re-identification of samples and data.62. Most respondents thought the Framework’s treatment of confidentiality was ‘veryacceptable’ or ‘acceptable’ (commitment to maintaining confidentiality: n = 15 [83%],treatment of anonymisation: n = 13 [72%], policy on re-identification: n = 13 [72%]).63. A number of respondents commented that the proposed system, although not “foolproof”or fully outlined to date, was sound in principle:‘In general, these principles are acceptable. They will never be foolproof, as if someone in a 'sensitive'position is determined to abuse the system, they will be able to. However, this is probably as effective asystem as it can be.’ [O]‘The steps that have been taken to ensure this seem to strike a balance between protecting the interestsof participants and ensuring that the data actually are available for scientific analysis.’ [O]24