Informed Consent for Biobanks: An open ethical debate

Abstract

Biobanks with Research purposes are increasing in number and importance, with great potential that contributes to the generation of knowledge relevant to solving health problems. For the Biobanks to be successful, donor recruitment is essential. However, this process has important ethical, legal and social implications. Informed consent required for the participation of the donor imposes significant ethical challenges about privacy, confidentiality, secondary use of samples and data for future studies, return of results, data exchange, and distribution of the benefits among others. Different templates of informed consent have been proposed to address some of these ethical challenges. However, an agreement has not been reached, and the discussion remains open. This work aims to contribute to the discussion, considering the meaning and value of the informed consent process for participation in biomedical research, and examines the different types of consents currently used evaluating the level of control and self-determination displayed by the donor.