To assess the attitudes of Irish patients attending a pigmented lesion clinic and healthcare staff employed in an academic hospital to biobanking, a quantitative study

Abstract

BackgroundA Biobank is a collection of biospecimens or biological samples and corresponding patient data points which are used for the purposes of medical research. Patient participation and support is imperative to biobank research.ObjectivesWe aim to quantitatively assess the attitudes of Irish patients attending a pigmented lesion clinic (PLC) in an Irish dermatology centre and staff working at an academic teaching hospital, to biobanking.MethodsA questionnaire was distributed to Healthcare staff working in an Academic Hospital and members of the Irish Association of Dermatology via their hospital email address. Patients who attended PLC January–April 2023, and patients previously diagnosed with melanoma January 2019–January 2021 were asked to complete the questionnaire. Respondents from a market research company, Bounce insights, was sent a modified questionnaire via a survey.ResultsIn total there were 426 respondents of ages; 16–<18 years = 31 (7%), 18–35 years = 105 (25%), 36–65 years = 191 (45%) and >65 years = 99 (23%). There were 166 (39%) males and 260 (61%) females. Of the 426 total respondents there were 180 (42%) previous healthcare workers. The number of total participants who were aware of biobanks was 130 (31%), no = 283 (66%), not sure = 13 (3%). Over 20% (84) of participants had donated a biospecimen previously. Healthcare workers reported a positive response in 84% (102) but only 46% (72) of the Bounce marketing respondents felt similarly (p = <0.001). Over 60% of healthcare staff, 16% of all patients and 21% of the Bounce marketing group were aware of Biobanks. In total 83% (352) of all respondents were willing to donate a biospecimen following a medical procedure but 78% (331) were willing to donate an additional blood sample and that number fell to 57% (242) when asked if they would donate an additional tissue sample purely for the purposes of research. The number who would encourage a family member to donate a biospecimen was; yes = 241 (56.5%), no = 41 (9.6%) and not sure = 144 (34%). Interestingly age was related to individuals' initial impression of biobanks (X2 (6, N = 426) = 32, p = <0.001), to a willingness to donate a biospecimen (p = <0.039) and to a desire to be informed if their specimen was disposed of (p = <0.001).ConclusionsIn Ireland, the majority of patients, healthcare workers and other members of the public are willing to donate biospecimens for the purposes of research.