@article{725341,
      recid = {725341},
      author = {Mascalzoni, Deborah,},
      title = {Ethics, law and governance of biobanking national,  European and international approaches / [electronic  resource] :},
      pages = {1 online resource.},
      abstract = {Biobank research and genomic information are changing the  way we look at health and medicine. Genomics challenges our  values and has always been controversial and difficult to  regulate. In the future lies the promise of tailored  medical treatments and pharmacogenomics but the borders  between medical research and clinical practice are becoming  blurred. We see sequencing platforms for research that can  have diagnostic value for patients. Clinical applications  and research have been kept separate, but the blurring  lines challenges existing regulations and ethical  frameworks.Then how do we regulate it? This book contains  an overview of the existing regulatory landscape for  biobank research in the Western world and some critical  chapters to show how regulations and ethical frameworks are  developed and work. How should international sharing work?  How design an ethical informed consent? An underlying  critique: the regulatory systems are becoming increasingly  complex and opaque. The international community is building  systems that should respond to that. According to the  authors in fact, it is time to turn the ship around.  Biobank researchers have a moral responsibility to look at  and assess their work in relation to the bigger picture:  the shared norms and values of current society. Research  ethics shouldn't only be a matter of bioethicists writing  guidelines that professionals have to follow. Ethics should  be practiced through discourse and regulatory frameworks  need to be part of that public discourse. Ethics review  should be then not merely application of bureaucracy and a  burden for researchers but an arena where researchers  discuss their projects, receive advice and practice their  ethics skills.},
      url = {http://library.usi.edu/record/725341},
      doi = {https://doi.org/10.1007/978-94-017-9573-9},
}