Abstract
BackgroundThe Italian Twin Registry (ITR) has been carrying out several genetic-epidemiological studies. Collection and storage of biological material from study participants has recently increased in the light of biobanking development. Within this scenario, we aimed at investigating understanding, awareness and attitude towards blood/DNA donation of research participants. About these quite unknown dimensions more knowledge is needed from ethical and social perspectives.MethodsCross-sectional mail survey to explore three dimensions: (i) understanding of aims and method of a specific study, (ii) attitude (three ideas for donation: "moral duty", "pragmatism", "spontaneity") and (iii) awareness (i.e. the recall of having been asked to donate) towards blood/DNA donation for research, among all the Italian twins who had participated in Euroclot (n = 181), a large international genetic-epidemiological study. Multivariate models were applied to investigate the association of sex, age, education and modality of Euroclot recruitment (twins enrolled in the ITR and volunteers) with the targeted dimensions. Pair-wise twin concordance for the "pragmatic" attitude was estimated in monozygotic and dizygotic pairs.ResultsResponse rate was 56% (99 subjects); 75.8% understood the Euroclot method, only 33.3% correctly answered about the study aim. A significantly better understanding of aim and method was detected in "volunteers". Graduated subjects were more likely to understand study aim. In the overall sample, the "pragmatic" attitude to blood donation reached 76.8%, and biobanking awareness 89.9%. The latter was significantly higher among women. Monozygotic twins were more concordant than dizygotic twins for the "pragmatic" attitude towards blood/DNA donation for research.ConclusionLevel of understanding of aims and methods of a specific research project seems to vary in relation to modalities of approaching research; most of the twins are well aware of having been asked to donate blood for biobanking activities, and seem to be motivated by a "pragmatic" attitude to blood/DNA donation. Genetic influences on this attitude were suggested. The framing of interests and concerns of healthy participants to genetic-epidemiological studies should be further pursued, since research, particularly for "common diseases", is increasingly relying on population surveys and biobanking.
Highlights
The Italian Twin Registry (ITR) has been carrying out several genetic-epidemiological studies
The survey and the questionnaire Within the research activities promoted by the Italian Twin Registry (ITR) [6], a cross-sectional survey by mail questionnaire was conducted on all the Italian twins who had participated to Euroclot, a large international geneticepidemiological study aimed at identifying genes associated with variations of the end-stage clotting process, and their role in the pathogenesis of stroke http://www.euro clot.eu/
Level of understanding of aims and methods of a specific research project seems to vary in relation to modalities of approaching research; most of the participants are well aware of having been asked to donate blood for biobanking activities, and seem to be motivated by a "pragmatic" attitude to contribute to research
Summary
The Italian Twin Registry (ITR) has been carrying out several genetic-epidemiological studies. Healthy individuals, who are required for epidemiological population-based studies, generally do not have urgent interests or immediate advantages to be obtained from these studies; actions which promote understanding of the aims and methods and enhance awareness of biobanking activities may contribute, on different perspectives, to increase individual trust and willingness to participate in research [2]. A comprehensive law regulating biobanking has not yet been issued, and at international level it has been often recognized that the act of withdrawing is the only "active role" of participants in human genetic biobanks [4] In this framework, motivation and attitude towards biobank-based research as well as donors' awareness for donation are relevant issues to be investigated from both scientific and ethical perspectives [5]
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