Public attitudes to the storage of blood left over from routine general practice tests and its use in research

Abstract

Objective: There is increasing international interest in DNA biobanks but relatively little evidence concerning appropriate recruitment methods for these repositories of genetic information linked to patient-specific phenotypic data. To this end, our study aimed to investigate the attitudes of members of the public recruited through general practices to the donation and storage of blood left over from routine clinical tests in general practice. Methods: A questionnaire was mailed to 2600 individuals randomly selected from two general practice patient lists in Dundee, Scotland. Using a 7-point Likert scale, respondents rated their attitudes toward DNA biobanks in general, and procurement of blood samples specifically. Results: Overall, 841 (34%) of 2471 delivered questionnaires were returned. Compared with patients on the practice lists, respondents were older and more likely to be women. A majority of respondents (61%) were unequivocally positive about storing blood left over from routine tests. Despite general support for this collection method, when asked about open-ended consent, respondents expressed concern about future uses. Respondents’ increasing age and level of deprivation had significant adverse effects on attitudes towards making leftover routine biological samples available for research (P = 0.013 and P = 0.034, respectively). The study had three main limitations: there was a low response rate (34%) such that respondents were not entirely respresentative of the survey population; some respondents had difficulty with the questionnaire; and the study was somewhat underpowered for some comparisons. Conclusion: Despite its limitations, this first survey of a general practice population suggests that the majority would be willing to consider giving open-ended consent for the use of blood left over from routine clinical tests in general practice to be stored and used later for medical research.