Changing Ethical Frameworks: From Individual Rights to the Common Good? (original) (raw)
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Genetic Information and Individual Rights, 2018
Health treatment fields face ethical and legal problems regarding the use of data. As we know, patients can benefit from having health or medical information available, and medical decisions can be more effective with a better understanding of clinical histories, medical and health data. Nevertheless, we need to guarantee privacy – including data protection rights – and confidentiality dealing with health data treatment challenges from a fundamental rights perspective. The paper analyses the actual challenges of the treatment of health data with the study of the legal framework.
Genetic Information and Individual Rights
The research activities will deal with the ethical and legal issues concerning the collection, the processing, the storage of the genetic and other kinds of data arising from the experimental activities, under the European Union (with reference with the European Charter of the European Union and the EU legislation and praxis), Members States and International perspective (especially taking into account the sources of the European Council, like as the Convention on Human Rights and Biomedicine and its Additional Protocols like as that one concerning Biomedical Research, and the Protocol Genetic Testing for Health Purposes). Indeed, the research in the genetic fields faces with ethical and legal problems, which have to be regulated under multilevel legal sources, praxis and interpretations. Generally speaking, the bioethics is a matter characterised by an ideological/political normative complexity and by the different aims. Furthermore, the ethical problems concerning the genetic research are very specific, due to the particular features by genetic information and the links and correlations with other kinds of personal data which are able to treat the privacy and other fundamental rights. This book is related to this phenomenon, also thanking into consideration information for genetic resources for research purposes, not only human data. In this sense, the contributions presented in this volume address some of the main problems and challenges faced by the specific legal and ethical problems of the genomic research, which are not easy to be solved under the principles and rules established at the different levels.
The ethics of genomic medicine: redefining values and norms in the UK and France
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This paper presents a joint position of the UK-France Genomics and Ethics Network (UK-FR GENE), which has been set up to reflect on the ethical and social issues arising from the integration of genomics into routine clinical care in the UK and France. In 2018, the two countries announced enhanced cooperation between their national strategies, Genomics England and Plan France Médecine Génomique 2025, which offers a unique opportunity to study the impact of genomic medicine and relevant policies in different national contexts. The paper provides first insights into the two national strategies and the norms, values and principles at stake in each country. It discusses the impact of genomic medicine on established relationships and existing regulations, and examines its effects on solidarity and trust in public healthcare systems. Finally, it uses the social contract as an analytical lens to explore and redefine the balance between individual rights and collective duties in the context ...
The Estonian Healthcare System and the Genetic Database Project: From Limited Resources to Big Hopes
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This article focuses on healthcare ethics discussions in Estonia. We begin with an overview of the reform policies that the healthcare institutions have undergone since the region regained independence from the Soviet Union in 1991. The principles of distributing healthcare services and questions regarding just what ethical healthcare should look like have received abundant coverage in the national media. An example of this is the exceptionally public case of V—a woman with leukemia whose expensive drugs the national health insurance fund refused to compensate. In our subsequent discussion, we focus on a grand-scale local healthcare and research project—the Estonian Genome Project—that attempts to include 1 million DNA samples into one database.