10 - Public discourses on human genetic databases

Summary

Introduction

The establishment of human genetic databases in different societies has brought along scholarly and public debates about the principles and implications underlying such biotechnological ventures. While raising a number of similar issues and concerns, such as the usage and security of the data stored in a database, protection of individual privacy and confidentiality, forms of consent required for genetic donation, questions of ownership, etc., the extent and nature of these debates as well as the responses given by the general public and professional groupings have varied from one context to another. Insights into these debates appear to be crucial for understanding and interpreting the formation of public opinion that has relevance both for the decision-making process related to the planning of such databases as well as to the legitimacy of the decisions.

The current chapter aims to examine particular discourses and framings applied by different actors in the domestic debates on national genome projects and their significance with respect to the public acceptance of these projects, particularly in the initial phase of their implementation. According to the definition proposed by Robert Entman, framing can be understood ‘as a discursive strategy of communication in which some aspects of a perceived reality are selected and given more salience in communication in order to promote particular problem definition, causal interpretation, moral evaluation and/or suggested treatment’.