Ethical and deontological aspects of pediatric biobanks: the situation in Italy
- PDF / 223,415 Bytes
- 9 Pages / 547.087 x 737.008 pts Page_size
- 2 Downloads / 125 Views
(0123456789().,-volV) ( 01234567 89().,-volV)
FULL LENGTH PAPER
Ethical and deontological aspects of pediatric biobanks: the situation in Italy Nunzia Cannovo . Rosa Guarino . Piergiorgio Fedeli
Received: 15 November 2019 / Accepted: 6 April 2020 Ó The Author(s) 2020
Abstract While pediatric biobanks are a precious resource for scientific research to improve our understanding of genetic pathologies, the value of these studies should be considered together with the value of the privacy rights of pediatric donors, as they are particularly vulnerable and in many cases unable to discern the meaning of the donation of biological material and the related implications of the research. Thus this work calls for reflection on the numerous ethical and legal issues involved in the development and regulation of these biobanks. In particular, it explores what form of consent best balances the intangible rights of the minor, on the one hand, and the development of technological progress and scientific research, on the other, and examines the implications of the collection of biological material of minors in biobanks. It focuses on solutions to bridge the gaps in current Italian legislation, especially in light of the current lack of attention to the interests of fragile N. Cannovo (&) Ethics Committee of University of Naples ‘Federico II’, Via Sergio Pansini 5, Naples, Italy e-mail: [email protected] R. Guarino University of Naples ‘Federico II’, Naples, Italy e-mail: [email protected] P. Fedeli Law School, University of Camerino, Via A. D’Accorso 16, Camerino, MC, Italy e-mail: [email protected]
subjects. In addition, this work presents an overview of the pediatric biobanks in Italy. Keywords Pediatric biobanks Italy Genetics research Regulation
Introduction Biobanks are an important resource for research, and in particular, pediatric ones can provide useful information for understanding the interactions between genetics and the onset of certain pathologies, enabling the development of studies about multifactorial pathologies and the achievement of personalized medicine (Brothers 2011). In particular, biological material stored in biobanks, in relation to the progress in research on the identification of genes and diseases, has made it possible to ascertain the causes of hereditary pathologies in family units (for example mitochondrial disorders and resistant epileptic encephalopathies), to learn about specific mutations, to prepare diagnostic tests to identify those with the disease and those who are bearers (Wright et al. 2018), to evaluate the risk of procreating, and to make possible prenatal diagnosis (Dagna Bricarelli 2011). A prime example of the value of translational genomics is the NIH-funded Clinical Sequencing Exploratory Research (CSER) Consortium, eMERGE
123
Cell Tissue Bank
(Electronic Medical Records & Genomics) Network, and PGRN (Pharmacogenomics Research Network) projects, that aim to research and develop best practices for translating genomics into clinical application (W
Data Loading...
