Traditional Informed Consent is becoming increasingly inadequate, especially in the context of research biobanks. How much information is needed by patients for their consent to be truly informed? How does the quality of the information they receive match up to the quality of the information they ought to receive? How can information be conveyed fairly about future, non-predictable lines of research? To circumvent these difficulties, some scholars have proposed that current consent guidelines should be reassessed, with trust being used as (...) a guiding principle instead of information. Here, we analyse one of these proposals, based on a Participation Pact, which is already being offered to patients at the Istituto Europeo di Oncologia, a comprehensive cancer hospital in Milan, Italy. (shrink)

We argue that, in the case of research biobanks, there is a need to replace the currently used informed consent with trusted consent. Accordingly, we introduce a proposal for the structure of the latter. Further, we discuss some of the issues that can be addressed effectively through our proposal. In particular, we illustrate: i) which research should be authorized by donors; ii) how to regulate access to information; iii) the fundamental role played by a Third Party Authority in assuring compliance (...) with the reciprocal expectations and obligations of donors and scientists. Finally, we briefly analyse two issues that might represent important elements of a ‘new alliance’ between researchers and donors to which the trusted consent could pave the way: i) the correlations between needs and rights of the two parties, and ii) possible economic transactions. (shrink)

We discuss the meaning of “being alive” and “being dead.” Our primary aim is to pave the way for a sound and accurate ethical debate concerning these two concepts. In particular, we analyze a metabolic approach and a genetic one and discuss the reasons for their failure to constitute a good starting point for successive debates. We argue that any ethical or social discussion of topics involving life and death must introduce cultural constructs such as, on the one hand, the (...) concept of clinical death and, on the other hand, the concept of existence. We argue that these two cultural constructs, although consistent with biomedical knowledge, cannot be ontologically grounded in it. To conclude, we apply our findings to the case of human embryos. (shrink)

Background. Since the nineties, policymakers and theorists working across several disciplines started to entertain the notion of directly engaging the public in matters of public concern. Accompanying this was the attempt to resort to deliberative democracy in order to make such an involvement effective. Seizing on its intrinsic dialogic nature, some scholars proposed the application of public deliberation to the realm of public bioethics. Drawing upon the theory and practice of deliberative public bioethics, the purpose of this paper is to (...) shed light onto the figure of the bioethical expert and its role in public bioethics, and relatedly, to investigate how deliberation may be implemented in a public bioethics context. Methods. We set up a large-scale experiment to investigate whether, and to what extent, different moderation styles impact on participants’ moral preferences. The study combines a survey of a representative sample of the general population with a laboratory experiment based on a random sample of students that ex-ante has identical attitudes to the general population.Results. Findings show that: i) different moderation styles can significantly influence deliberative outcomes; iii) the effects of deliberation are not necessarily immediate, but may be revealed after the end of deliberative session; iii) participants tend to better appreciate a bioethical expert acting as “passive moderator”, namely as someone who acts in order to ensure non-domination and non-interference, thus allowing the creation of basic conditions for equality within the deliberative setting.Conclusions. Our experiment represents an example of how deliberation can be employed in public bioethics. (shrink)