Human tissue samples and ethics--attitudes of the general public in Sweden to biobank research.

PURPOSE

To survey the attitudes of the general public in Sweden to biobank research and to discuss the findings in the light of some well-known ethical principles.

METHODS

A questionnaire was used to survey the opinions of the general public in Sweden, and an ethical analysis (using the principles of autonomy, non-maleficence, beneficence and justice) was performed to discuss the possible conditions of such research.

FINDINGS

Between 3 and 9% answered that they did not want their samples to be collected and stored in a biobank. Many respondents required information about the purpose of the research and wanted to be able to consent or refuse. About one third of the respondents said they would have answered differently if financial gain was involved and those who commented indicated a more negative attitude. The principle of autonomy maintains that the right to self-determination should be respected, and the principles of non-maleficence and beneficence that the probable harms and benefits resulting from a particular project by using samples from a biobank should be balanced. The general public disagree about how these principles are to be balanced.

INTERPRETATION

In the light of the findings different interpretations of the situation as well as possible alternatives are discussed in this paper.