Reshaping informed consent in the biobanking context.
In my article, I discuss the role of informed consent in the context of biobanking. I argue that the basic issue in understanding the role of the consent is one of identifying the interests at stake and determining which of these interests we intend to promote. The definition of the informational content represents only a consequential step. For this purpose, I analyse the legal status of human biological materials from three different perspectives: "material", "informational" and "relational". Informed consent produces different effects on each of these perspectives. From the material perspective, consent can influence the allocation of property rights over human tissue; from the informational point of view, consent is the legal instrument that permits control over personal data; while from the "relational" perspective, it is possible through consent to ensure that the person's personal beliefs are respected. The crucial point is that the legal effects that informed consent has on the three perspectives overlap. Therefore, in order to understand the role of informed consent holistically, in this article I analyse how these perspectives relate to each other. This analysis shows that the relationship between the perspectives can vary depending on the interests that we intend to promote. If we intend to promote the freedom of research, then the material dimension can prevail, whilst if we focus our attention on the interests of individuals then the informational and the relational dimensions will prevail. The challenge is to find a good balance between these two extremes.
Department of Legal Science University of Trento, Trento, Italy.
Matteo
M
Macilotti
D018070:Biological Specimen Banks / Q000331:legislation & jurisprudence*; D003219:Confidentiality / Q000331:legislation & jurisprudence; D005060:Europe; D006801:Humans; D007258:Informed Consent / Q000331:legislation & jurisprudence*; D010067:Ownership / Q000331:legislation & jurisprudence; D012106:Research / Q000331:legislation & jurisprudence*