Attitudes and willingness to donate biological samples for research among potential donors in the Italian Twin Register

J Empir Res Hum Res Ethics. 2014 Jul;9(3):39-47. doi: 10.1177/1556264614540601.

Abstract

Most ethical and social research is focused on disease-oriented biobanks, while healthy donors' motivation toward population biobanking is scarcely explored. We investigated willingness to donate biological samples for research and attitudes toward donation by a mail survey among 4,894 twins enrolled in the population-based Italian Twin Register. We compared responses in different socio-demographic categories and estimated, by the twin design, environmental and genetic components of this attitude. More than 80% of respondents expressed willingness to donate. A prevailing collaborative attitude to donation emerged. Attitude was mainly influenced by individual social and cultural factors. Education was important in shaping motivation and willingness to donate. Future surveys of the general population are desirable to continue investigating attitude toward donation and concerns about biobanking.

Keywords: attitude to donation; biological samples; cross-sectional survey; ethics; genetic epidemiology; population biobanking; twin study; willingness to donation.

Publication types

  • Research Support, Non-U.S. Gov't
  • Twin Study

MeSH terms

  • Adolescent
  • Adult
  • Altruism
  • Attitude*
  • Beneficence
  • Biological Specimen Banks*
  • Biomedical Research*
  • Cooperative Behavior
  • Culture
  • Humans
  • Informed Consent
  • Italy
  • Middle Aged
  • Motivation
  • Patient Selection
  • Personality / genetics
  • Reference Values
  • Social Behavior*
  • Surveys and Questionnaires
  • Tissue Donors* / ethics
  • Tissue and Organ Procurement* / ethics
  • Twins*
  • Young Adult