title: Research understanding, attitude and awareness towards biobanking: a survey among Italian twin participants to a genetic epidemiological study.
abstract: BACKGROUND
  The 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.
  
  
  METHODS
  Cross-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.
  
  
  RESULTS
  Response 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.
  
  
  CONCLUSIONS
  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 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.
authors.affiliation: Genetic Epidemiology Unit, National Centre of Epidemiology, Surveillance and Health Promotion, Istituto Superiore di Sanità, V. Regina Elena 299, Rome 00161, Italy. virgilia.toccaceli@iss.it
authors.forename: Virgilia
authors.initials: V
authors.lastname: Toccaceli
authors.forename: Corrado
authors.initials: C
authors.lastname: Fagnani
authors.forename: Lorenza
authors.initials: L
authors.lastname: Nisticò
authors.forename: Cristina
authors.initials: C
authors.lastname: D'Ippolito
authors.forename: Lorenzo
authors.initials: L
authors.lastname: Giannantonio
authors.forename: Sonia
authors.initials: S
authors.lastname: Brescianini
authors.forename: Maria Antonietta
authors.initials: MA
authors.lastname: Stazi
mesh_terms: D000328:Adult; D001290:Attitude; D001364:Awareness; D001782:Blood Donors / Q000706:statistics & numerical data; D003430:Cross-Sectional Studies; D004247:DNA; D016021:Epidemiologic Studies; D005260:Female; D006801:Humans; D007558:Italy; D008297:Male; D008875:Middle Aged; D015999:Multivariate Analysis; D012042:Registries; D017678:Sex Distribution; D011795:Surveys and Questionnaires; D014015:Tissue Banks; D014427:Twins; D014429:Twins, Dizygotic; D014430:Twins, Monozygotic
chemical_list: D004247:DNA