RESEARCH ARTICLE


Informed Consent for Genetics Research in Italy



Piergiorgio Fedeli1, Nunzia Cannovo2, *, Rosa Guarino2, Vincenzo Graziano3
1 Jurisprudence School, University of Camerino, Via A. D'Accorso 16, Camerino (MC), Italy
2 Department of Bioethics, University of Naples 'Federico II', Via Sergio Pansini 5, Naples, Italy
3 Department of Advanced Biomedical Sciences, University of Naples 'Federico II', Via Sergio Pansini 5, Naples, Italy


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© 2019 Fedeli et al.

open-access license: This is an open access article distributed under the terms of the Creative Commons Attribution 4.0 International Public License (CC-BY 4.0), a copy of which is available at: (https://creativecommons.org/licenses/by/4.0/legalcode). This license permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

* Address correspondence to this author at the Department of Bioethics, University of Naples 'Federico II', Via Sergio Pansini 5, Naples, Italy; E-mail: nunzia.cannovo@gmail.com


Abstract

Background:

Genetic research has become an indispensable instrument for medical research, and the subjects involved have both divergent and convergent interests.

Objective:

The possibility of having more detailed genetic information undoubtedly offers benefits for the health of the subject, but could also pose risks and make the subject vulnerable to discrimination.

The scientific community has viewed very favorably the public health utility of family history, in which data from a family whose members suffer from chronic pathologies is collected and filed, in order to develop a sort of "stratification of family risk."

Even though in the last decade the scientific and juridical literature has contributed greatly to the topic of biobanks, the perplexities that continue to surround this theme give the idea that current ethical protocols on research are inadequate.

Conclusion:

Genetic data must be used not to exploit, but to serve the person. Freedom and responsibility must be the twin guiding lights for establishing parameters for the use of biological samples. An evaluation of how this technology impacts the various aspects of the future of society is urgently needed.

Keywords: Biobanks, Genetics research, Italian normative, Informed consent, Sample, Italy.