Personalized medicine and research biobanking: From traditional to new informed consent generating a need for participatory governance [BOOK CHAPTER]

Personalized medicine and research biobanking: From traditional to new informed consent generating a need for participatory governance [BOOK CHAPTER]
Antonella Ficorilli
Personalized Medicine in the Making, 8 March 2022; pp 249-267 [Springer]
Abstract
Emerging personalized medicine necessitates the collection, storage and processing of an increasing number and type of human biological samples and associated data within research biobanks throughout the world, materials and data which will be used in future large-scale health-related studies. Hence, ethical concerns regarding biobanks have increased. Here, issues pertaining to autonomy and privacy will be considered, as well the related debate mainly focused on whether or not maintaining the informed consent model used in traditional health research sufficiently guarantees the dignity and rights of subjects, while at the same time serving as a good tool to obtain an appropriate balance between the research subjects’ interests and the public interest. The present paper aims to illustrate the evolutionary path of ethical reflection in this regard towards new models of informed consent, such as broad consent, dynamic consent, and meta consent. At the same time, this path generates the need for new types of governance that take into account the necessity of involving subjects in the decision-making process, especially in light of advancements in data mining and big data technologies.

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