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IFEIT ETHICAL COMMITTEE ACTIVITIES (2014)

The IFEIT Ethical Committee comprises Professor Marino Bonaiuto (President), Sapienza Università di Roma; and Doctor Uberta Ganucci Cancellieri, Università per Stranieri "Dante Alighieri" di Reggio Calabria, also Sister at the Fraternità Maria Immacolata.
The Ethical Committee promotes scientific researches on the social-psychological aspects implied by biomedical issues and by the related ethical questions. The aim is to provide scientific knowledge in order to describe and understand psychological, social, ethical and other features implied by the ongoing progresses in the fields of hemapheresis , innovative therapies based on cells and/or their components and advanced diagnostics related to these biomedical areas. Indeed, such progresses continuously pose dilemmas to the individual, the communities s/he belongs to, up to the whole society at large. These dilemmas go beyond the strictly scientific relevance of the progress, and they invest all dimensions of human life: psychological, social, cultural, anthropological, religious, ethical, economical, legal, political, etcetera. Often, the debates over these issues get stuck into ideological frameworks and media arenas, which can then affect a number of crucial factors, such as public opinion, research funding, legal decisions, just to quote a few frequent cases. There is thus the need to better scientifically understand how people perceive these issues; how they form representations, opinions, attitudes, beliefs, values, norms about them; how they evaluate and judge them; how they form intentions, take decisions, and finally pursue actions over these issues.
The IFEIT Ethical Committee wants to promote, and contribute to, such scientific endeavour which is presently largely underdeveloped, being squeezed between the relevant biomedical area progresses, and the mass media attention they receive in order either to support or to contrast them. Such endeavour must necessarily start with a proper review of the existing scientific literature surveying the non-necessarily biomedical scientific research on the biomedical topics IFEIT focuses on, with a specific attention on the social-psychological research which is able to address the way people relate to such biomedical areas. In this sense, IFEIT Ethical Committee strives for an evidence based approach to the ethical dilemmas, based on a scientific approach to the study of the public information and opinion on biomedical issues and of the relationships among the person and the biomedical progress. From a very preliminary survey of the relevant scientific literature, already existing research areas on which IFEIT Ethical Committee's activity could be promoted in the future could be summarized as follows:

1) Donor's profile: Motivation/De-motivation toward the action, for either research's or therapy's aims, regarding blood, organs, stem cells (bone marrow, umbilical cord and placenta, reprogrammed stem cells), with attention to: a) Donors vs. Potential donors; b) Research vs. Therapy.

2) Donation's use: Knowledge, perceptions and representations, attitudes, opinions, subjective norms, intentions, etc. regarding donations' uses (mainly stem cells): Donors vs. General Public; b) Research vs. Therapy.

IFEIT's interest will bring the focus mainly on stem cells and hematic components, for both research and therapy ends, targeting both experts and general public samples. Different techniques and methodologies can be envisaged to pursue studies on this. Among the first steps, a research with a general questionnaire is planned according to the following steps:

I. A draft general questionnaire, broad enough to cover with a 360° approach a wide range of relevant constructs, such as: self-assessed knowledge, actual knowledge, representations, values, beliefs, norms, attitudes, intentions, socio-demographics.
II. Draft questionnaire cross-check with both scientific and ethical components within IFEIT, creating parallel versions for experts and lay-persons' samples.
III. Piloting on a test sample, with feedback and adjustments.
IV. On-line platform link on IFEIT web site and email communication to target samples.
V. First version sampling.
VI. Multivariate statistical analyses and development of the standard version for future usages (different samples; information increase; change of focus; further variables/constructs to be correlated; etc.)