Genetic Databases and Public Attitudes: A Comparison of Iceland, Estonia and the UK
Korts, Kulliki, Weldon, Sue, Guomundsdottir, Margret Lilja, Trames
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 up in many countries throughout the world. These databases vary to the extent that they combine genetic information with medical information of large populations and, in some cases, genealogical records. The researchers from three countries currently involved in such projects--Iceland, Estonia and the United Kingdom--are partners in an EC funded research project to investigate the Ethical, Legal and Social Aspects of Genetic Databases (ELSAGEN). It is widely recognised that a key challenge posed by the operation of population based databases containing genetic information is to find ways of protecting the interests and concerns of individuals, whilst at the same time creating opportunities for more information to be made available to medical research. In this sense genetic information emerges as a key political issue, in discussions about its ethical, legal and social aspects, because it straddles the boundary between the individual concerns of the donor, or patient, and the wider social concerns of citizens. One of the research aims of the ELSAGEN project is to provide more information and a better understanding of these concerns.
In presenting our findings concerning public attitudes in the three countries, where database projects are prepared or already being implemented, we begin by comparing the very different political, economic and social context in which they are being set up and by considering what factors, in the presentation of these projects to the nation's public, might have affected their reception. We have also taken account of all the information available to us relating to people's general attitude to science and technology in each country. This article then begins to draw links between the particular social contexts of introducing the projects and the actual working principles of the data banks, with respect to the involvement of the public as donors and as beneficiaries. This, to some extent, could be seen as our baseline but in order to address the research aims referred to above we also drew on more detailed studies about public attitudes to genetic information, and we undertook our own empirical investigations based on surveys and focus groups.
The following comparative review discusses the public views on the nature of participation (voluntary or presumed), as well as the anonymity of data gathered (issues associated with privacy and the possibility for feedback). We also bring together comparative research that allows us to draw conclusions about how to interpret those results that refer to general levels of public trust in the ability of scientists and institutions to regulate the operation of the database projects.
2. Comparing the context
The database projects will be described in detail in section 3 but we begin by comparing and contrasting the national contexts in more general terms and by examining existing evidence relating to general attitudes to science and technology in each case.
Iceland is a small country with a very small population (280,000 people) even compared with Estonia (1,370,000), but Icelanders are proud to be seen as a rapidly developing technologically motivated society with exceptionally high levels of literacy and per capita income. Surveys have revealed that a relatively high proportion of the Icelandic people (84%) think that more emphasis on the development of technology would be good (Halman 2001). On the other hand, the UK public (a culturally diverse population in excess of 58,000,000) has a complex and chequered relationship with science, and with the technological development that has marked its progress into the twenty-first century. Repeated surveys and other evidence reveal a well-entrenched feeling of scepticism in the British public towards government regulation and scientific advice. …