Trames

Covers a wide range of the humanities and social sciences with preference to broader theoretical attitude and a possible interdisciplinary approach.

Articles from Vol. 8, No. 1-2, March-June

Constructing Public Images of New Genetics and Gene Technology: The Media Discourse on the Estonian Human Genome Project
1. Introduction The perceptions and attitudes people hold towards science and technologies at large are often characterised by a certain ambivalence in which optimism about prospective outcomes of scientific research and technological advances is...
Ethical Aspects of Human Genetic Databases: Distinctions on the Nature, Provision, and Ownership of Genetic Information
1. Background This article is primarily focused on the Icelandic Health Sector Database (HSD), an issue that has become a sort of paradigm for many discussions about the ethical aspects of human genetic databases in the "first" world. Its aim is...
Genes of a Nation the Promotion of Iceland's Genetic Information
1. Introduction At the beginning of the year 2000, deCODE Genetics, Inc., a profit-making genetics company, received a private license to construct the Icelandic Health Sector Database (HSD), based on a law passed two years earlier. It was foreseen...
Genetic Databases and Public Attitudes: A Comparison of Iceland, Estonia and the UK
1. Introduction This paper reports the initial findings, from three countries, of a comparative study of public attitudes to, and perceptions of population based genetic databases in those countries. Database projects are now being planned and set...
Human Genetic Databases: Ethical, Legal and Social Issues: Preface to the Special Issue of Trames
1. The boom of DNA banking The last few years have witnessed an important expansion of DNA banking all over the world. The collections of DNA samples vary in design and purpose (Cambon-Thomsen et al; 2003 Palmour 2003), occurring in a variety of...
Informed Democratic Consent? the Case of the Icelandic Database
1. Introduction The following discussion is about plans currently being carried out in Iceland to create a single health sector database for the whole nation, intended in part for research in human genomics and genetic epidemiology. The rapid rise...
Introducing Gene Technology to the Society: Social Implications of the Estonian Genome Project
1. Introduction In the framework of the theory of risk society, introducing the idea of a population-based gene bank into the Estonian society is significant from several aspects. First, in most general terms, the latest developments in gene research,...
Key Issues in Genetic Epidemiology: Lessons from a UK Based Empirical Study
1. Introduction Population-based genetic research aims to study gene-disease associations and genetic polymorphisms. By combining genetic samples (taken from blood or tissue) with medical, genealogical and lifestyle information, researchers hope...
Legal and Ethical Aspects of the Participation of Persons with Restricted Active Legal Capacity in Genome Studies
1. Introduction The goal of the Estonian Genome Project is to establish a database (the Gene Bank) consisting of phenotype and genotype data of the majority of the Estonian population (1.4 million inhabitants). On the basis of the data stored in...
Population Biobanks and Social Justice: Commercial or Communitarian Models? A Comparative Analysis of Benefit Sharing, Ownership and Access Arrangements
Introduction The combination of developing genomics and information technology in the form of population biobanks has led to wide ranging discussions of the ethical, legal and social implications of this new resource. Whilst the potential offered...
Population Genetic Databases: A Comparative Analysis of the Law in Iceland, Sweden, Estonia and the UK
1. Introduction The first population genetic database proposed in the world was the Icelandic Health Sector Database (HSD) in 1998, followed by the Umangenomics proposal in Sweden, the Eesti Geenivaramu in Estonia and the UK Biobank. It is only...
Rich Databases and Poor People: Opportunities for Developing Countries
1. Introduction Technology has been at the heart of human progress since earliest times. There are different perceptions of technology, some people view technology as a reward of development and some people consider technology as a tool for human...
Science Communication and Science Policy: Estonian Media Discourse on the Genetic Database Project
1. Introduction The Estonian Human Genome Project was launched in 1999, with the objective of establishing a nation-wide database of health and genetic data. It will contain phenotype and genotype data on the entire adult population of Estonia (around...
Should Results from Genetic Research Be Returned to Research Subjects and Their Biological Relatives?
1. Introduction Medical research focusing on genetic disorders and changes will occasionally generate knowledge about a research subject's possible carrier status and his or her current or future disease. Furthermore, the knowledge gained often...
The Estonian Genome Project and Economic Development
1. Introduction W. Brian Arthur has recently described what he calls casino of technology strategizing for high technology and high risk ventures as follows: Imagine that all technology strategizing takes place in a big casino. There are gaming...