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Rights and Science/R&S Rights and Science/R&S Volume 0 (2017) Issue 0 EDITOR IN CHIEF MARIO I. ÁLVAREZ LEDESMA Tecnológico de Monterrey CO-EDITORS ROBERTO CIPPITANI Università degli Studi di Perugia VALENTINA COLCELLI Consiglio Nazionale delle Ricerche - IFAC EDITORIAL BOARD SECRETARY RONAN CIRÉFICE IELEPI, Juri-Dileyc EDITORIAL BOARD CARLOS F. MOLINA DEL POZO (Universidad de Alcalá) (Coordinador) CRISTINA BLANCO SÍO-LÓPEZ (European University Institute) MAURIZIO BORGHI (University of Bournemouth) HELLEN PACHECO CORNEJO (Universidad de la Frontera) CRISTIANO PERUGINI (Università degli Studi di Perugia) TUNJICA PETRASEVIC (J.J. Strossmayer University of Osijk) JOAQUÍN SARRIÓN ESTEVE (Universidad Nacional de Educación a Distancia) DAVID ZAMMIT (University of Malta) SCIENTIFIC COMMITTEE REINER ARNOLD (Universität Regensburg) (President) LUIZ ARCARO CONCI (Universidade Católica de São Paulo) ALASDAIR BLAIR (De Montfort University) HEDLEY CHRIST (University of Brighton) FABRIZIO FIGORILLI (Università degli Studi di Perugia) YOLANDA GÓMEZ SÁNCHEZ (Universidad Nacional de Educación a Distancia) KHUBUA GIORGI (Technische Universität München – TUM) LUCA MEZZETTI (Alma Mater – Università di Bologna) MANUEL MUNIVE PÁEZ (Escuela Libre del Derecho) JOAKIM NERGELIUS (Örebro Universitet) CALOGERO PIZZOLO (Universidad de Buenos Aires) ANDREA SASSI (Università degli Studi di Perugia) JOHN ALBERTO TITO (Universidad del Norte) ANDREA TRISCIUOGLIO (Università degli Studi di Torino) Rights and Science/R&S Rights and Science/R&S SPONSORSHIPS JEAN MONNET CENTRE OF EXCELLENCE “RIGHTS & SCIENCE” – UNIVERSITÀ DEGLI STUDI DI PERUGIA WITH THE SUPPORT OF THE JEAN MONNET PROGRAMME OF THE EUROPEAN UNION Vol. 0, Issue 0 2017 R&S REVIEW is not necessarily identified with the opinions expressed by its collaborators in the signed articles that are reproduced. Any form of reproduction, distribution, public communication or transformation of this work can only be done with the authorization of JURI-DILEYC. R&S focuses on the various juridical and academic aspects of the relationship between law and science as well as on their impact on research and innovation activities in the European, international and national legal systems, economies and societies. The journal adopts a multidisciplinary and international perspective, emphasizing the current problems and challenges arising scientific activities, with particular attention to the freedom of research and its limits, the ethical issues, the organisational aspects of science and innovation. Furthermore, the review will be opened to the insights concerning the relation between science and technology and other disciplines such as philosophy, ethics, economics, sociology, and history. rightsandscience.juri-dileyc.com rightsandscience.eu © 2017 Juri-Dileyc, C/ Velázquez 94, 1ª planta, 28006 Madrid (Spain) NIF: B87486213 ISSN: 2531-1352 [email protected] Annuals All rights reserved TABLE OF CONTENTS I. Editorial MARIO I. ÁLVAREZ LEDESMA (EDITOR EN CHIEF) 11 II. Essays section Global governance in genetic, genomic, and proteomic databases - A right to privacy against a societal good 15 HEDLEY CHRIST The “curious case” of Italian Law No. 40 of 2004: how the dialogue between judges is modifying the legislation on medically-assisted reproduction 23 ROBERTO CIPPITANI Research activity and the principle of solidarity in the EU legal framework for biodiversity 43 VALENTINA COLCELLI La importancia de la biodiversidad, el sistema de patentes, el acceso al conocimiento en la investigación científica 55 MARCELO FIGUEIREDO La responsabilidad del investigador en la Unión Europea 73 CARLOS FRANCISCO MOLINA DEL POZO Social and cultural implications of the new communications technologies: its human rights education challenges in the current century 81 ENRIQUE NIETO SOTELO Fundamental rights of researchers in European Union 101 PAULA PORETTI The breeder’s exception to patent rights as a new type of research exception 109 VIOLA PRIFTI Rights and science in the drone era. Actual challenges in the civil use of drone technology JOAQUÍN SARRIÓN ESTEVE | CRISTINA BENLLOCH DOMÈNECH 117 I. Editorial INTRODUCTION The relationship between rights and science is not an easy task. There are a lot of reasons for stating this. Certainly, this introduction is a straightforward, though far from a simple way of explaining the main objectives of our journal. Through Rights & Science (R&S), we will be exploring the many faces and infinite possibilities of this relationship, which I have always called a dangerous one. Why? Initially, the most relevant perspective of this relationship is the ethical aspect, which implies a natural tension between science and the moral contents of the law. Today it is generally accepted that the law is a privileged instrument to perfom the axiological purposes of a society throughout the different historical contexts. Every legal system has, and will have, its moral standards. In many ways, the law is, according to contemporary sociology, the legitimate tool to guarantee the latest objectives and goals of a society or the goals of the group that holds the political power. Unfortunately, there are multiple examples that place the law as a significant obstacle to science development. This was mainly true in the past, but it is also occurring in our times and might continue in the future. This is the main reason why our journal considers it quite necessary to explore how the law, now supposedly based on the human rights ideals of the Western democratic societies, regulates (I do not say control) scientific development. Obviously, R&S is concerned with the importance of directing science development toward the social welfare. But, what does social welfare mean? In a democratic or non-democratic political system, who decides what is the right direction? The previous questions imply multiple answers because we are facing profoundly difficult tasks. I decided to start this introduction by showing only one of the most disturbing aspects of the relation between rights and science. I did this in order to highlight that our journal is open to receiving contributions with the end of understanding the many other aspects of this relationships. In fact, R&S addresses the various juridical and academic aspects of the relationship between law and science, as well as their impacts on the research and innovation activities in the European, international and national legal systems, economies and societies. R&S has a multidisciplinary and international aim, emphasizing the current problems and challenges that have emerged in the scientific, investigative and innovation activities, paying especial attention, as mentioned before, to the rights, obligations and issues, both legal and ethical, of said activities. All this having been said, R&S will attempt to provide a forum for discussing the juridical, legal and ethical issues of the research and innovation activities. Contributions may explore these topics at different levels. They may analyze the legal instruments to implement them - in particular, the funding programs. Furthermore, the journal welcomes the insights concerning the relation between science and technology as well as other disciplines, such as philosophy, economics, sociology, and history. Finally, as editor in chief, I want to express on behalf of the R&S Editorial Board my gratitude for the generous response from our colleagues who decided to contribute to this issue 0, who prepared their essay specifically for our journal. MARIO I. ÁLVAREZ LEDESMA (EDITOR EN CHIEF) © Juri-Dileyc 11 II. Essays section GLOBAL GOVERNANCE IN GENETIC, GENOMIC, AND PROTEOMIC DATABASES - A RIGHT TO PRIVACY AGAINST A SOCIETAL GOOD 1 HEDLEY CHRIST ARTICLE INFO ABSTRACT Ever since the mapping of the human genome, the amount of human genetic data now being collected has been called a tidal wave of data. Such data is being stored with the principal aim of using such data for research, primarily in genetic diseases, but not exclusively. Such databases become more powerful when they are linked, because of the increased number of DNA sequences that can be searched. However, this provides for significant problems of management and governance of these databases, not least because they hold genetic information on identifiable individuals and therefore, there has to be control over access to these databases. But, beyond such issues lie a number of legal problems which relate to patients’ rights and patients’ duties to society and medical research; questions of ownership, not only of the databases themselves, but also the genetic information stored in such databases, particularly with the issues related to intellectual property rights. This brief paper examines the need for governance of such databases, principally through soft law techniques of international regime analysis. KEYWORDS Genetic, genomic, and proteomic databases. Global governance. Right to privacy. Societal good. The concept of human rights in patient care has wide application. It includes bioethics, patients’ rights, right to health, and patient safety. But beyond this there is a societal good in that, information gathered from patients may help in providing cures for specific diseases or conditions. Human rights in patient care therefore, addresses wider rights, including the benefits to other patients than the one undergoing investigation and treatment. However, this inevitably encompasses a conflict between the right of the patient and the information that they provide, particularly when the information
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